Podcasts by SMA News & Perspectives
Daily, digital coverage of the latest SMA news and perspectives.
Further podcasts by SMA News Today
Podcast on the topic Gesundheit und Fitness
All episodes
Evrysdi for Infants Under 2 Months Old Given FDA Priority Review & Adapting to a New Wheelchair from 2022-02-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the FDA is reviewing a request that the use of Evrysdi, an oral and at-home SMA treatment, be extended to pre-symptomatic babi...
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#100: Interview with Gabrielle Runyon, College Student with SMA and Disability Advocate from 2022-02-15T00:00
In episode 100, host Kevin Schaefer talks with Gabrielle Runyon (she/her) from Louisville, Kentucky. Gabrielle is a sophomore at the University of Louisville, studying psychology. She talks about g...
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SMA Linked to “Significant” Economic Burden from 2022-02-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a "significant" burden in direct and indirect costs is evident in caring for people with spinal muscular atrophy, a large revi...
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Therapy Effectively Treats SMA in Mice With Evident Symptoms & Tackling New Challenges With SMA from 2022-02-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how scientists gave a new, noninvasive type of antisense oligonucleotide therapy to symptomatic SMA mice and saw promising results...
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#99: SMA and Motherhood from 2022-02-01T00:00
In episode 99, host Kevin Schaefer talks with two mothers from the SMA community. Trudy Citovic lives in Oregon, and her daughter Alina has SMA.
As an advocate for newborn screenings, she...
Spinraza Plus Zolgensma Offers Little Extra Benefit in Type 1, Study Suggests from 2022-01-31T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how a small group of children given the gene therapy after Spinraza's start showed only slight further gains; early t...
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Spine Surgery Effective in SMA Type 1 Children & Mentally Preparing For Surgery from 2022-01-27T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how surgery to correct kyphoscoliosis — an abnormal curvature of the spine found in children with SMA type 1 — also allows Spinraz...
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Wheelchair Hockey Linked to Physical, Psychological Gains & Preserving Privacy When Living with SMA from 2022-01-24T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how men with spinal muscular atrophy or Duchenne muscular dystrophy who played wheelchair hockey showed quality of li...
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Scholar Rock Shares Design of Phase 3 Trial Testing of Apitegromab & Staying Organized With SMA from 2022-01-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock's global apitegromab trial, likely to open next year, will test its muscle-directed therapy in type 2 and 3 patients ...
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#98: How to Manage Caregivers, a Chat with SMA Contributors DeAnn Runge and Michael Morale from 2022-01-18T00:00
In episode 98, host Kevin Schaefer talks with fellow SMA News Today contributors about hiring and managing caregivers. Listen as Kevin talks with DeAnn Runge and Michael Morale about their experien...
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Spinraza May Restore Development of Motor Neurons & Why Finding Reliable SMA Carers Is Not Easy from 2022-01-17T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discuses how a study in symptomatic SMA children suggests Spinraza also works to return development to these nerve cells, especially if give...
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Son With SMA Inspires Character on ‘Ordinary Joe’ TV Show & How SMA Can Shape Creativity from 2022-01-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge reads an article about John Gluck, who has a type of muscular dystrophy, portrays versions of Joe's wheelchair-bound son with SMA on the NBC ...
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Evrysdi May Be Available in Early 2022 to Eligible UK Patients &Modifying a Wheelchair for SMA Needs from 2022-01-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how The National Institute for Health and Care Excellence has recommended that Evrysdi be provided at low or no cost to eligible S...
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Spinraza Improves Hand Dexterity in SMA Type 2 Children & Achieving Ambitions with SMA from 2022-01-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improved fine manual dexterity in both hands of five children with SMA type 2 over 1.5 years of treatment, a case ser...
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#97: Interview with Ali Ramos, a Social Worker and Disability and LGBTQ+ Activist. from 2022-01-04T00:00
In episode 97, host Kevin Schaefer talks with Ali Ramos (she/her) from Amarillo, Texas. Ali is a licensed social worker and activist, focusing on both the disability and LGBTQ communities. She talk...
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Spinraza Delays Do Not Directly Affect Children in Italy & Making Goals with SMA from 2022-01-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads a news article on how the delays in Spinraza treatment due to the COVID-19 pandemic did not directly result in worsening symptoms in c...
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Saliva Samples May Help Diagnose SMA & Moving Into a New Home with SMA from 2021-12-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study showed for the first time that genetic analysis of dried saliva spots correctly identified people with spinal muscular...
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Poor Spinraza Adherence Leads to More Illness, Healthcare Costs & December Can Be Bittersweet from 2021-12-27T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how not having Spinraza therapy as prescribed – called treatment non-adherence – increases overall costs and healthcare use for SM...
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Treatment Delays May Be Less Important Than Family Support & Cherishing Togetherness During Holidays from 2021-12-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses
how delays of Spinraza treatment due to COVID-19 seem to affect children's function less than weaker family support, small st...
Phase 3 Trial of Apitegromab on Track for This Year & Managing Technological Issues With SMA from 2021-12-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock plans to initiate a pivotal trial of its muscle-targeted therapy in non-ambulatory spinal muscular atrophy patients i...
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Neurofilaments and Nerve-muscle Test Show SMA Severity & SMA Adults Struggle to Access Evrysdi from 2021-12-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severit...
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#96: Chat with SMA Columnist Halsey Blocher and her Mother & Caregiver, Heather Dye from 2021-12-14T00:00
In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate...
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Novartis Applauds Move to Reimburse Families for Zolgensma & Making Connections with SMA from 2021-12-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene th...
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Acute Liver Failure Warning Added to Zolgensma Label & Time Management and SMA from 2021-12-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atro...
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Oral SMA Therapy Is Ideal and Aids Motor Skills and Breathing & Why No Changes in SMA is Good from 2021-12-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how better/stable motor function and breathing, along with oral use, is ranked high in a UK survey of SMA type 2 and 3 adult patie...
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TXA Reduces Blood Loss During Scoliosis Surgery & Taking A Break For Emotional Wellness from 2021-12-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge discusses how a recent study found that Tranexamic acid effectively reduced blood loss by over 50% during surgery to correct scoliosis due to...
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#95: Interview with the SMA Creatives Behind "Spaces" Music Video from 2021-12-01T00:00
In episode 95, host Kevin Schaefer talks with the creators of the new song “Spaces.” Done in collaboration with Genentech, this production was created entirely by people from the SMA community.
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Weak Trunk Muscles And Spine Problems Need Early Attention in SMA & The Human Side of the Internet from 2021-11-29T00:00
SMA News Today’s multimedia associate Price Wooldridge, discusses an article on how spinal deformities and weak trunk muscles put substantial limits on the functional abilities of SMA children and ...
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Clinical Trial to Test Antibody Use With Evrysdi & Thanksgiving Challenges from 2021-11-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Roche and Genentech will initiate a Phase 2/3 clinical trial to evaluate the safety and efficacy of GYM329 in combination with...
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Organization Aims to Make Planes Wheelchair-Accessible & Dealing with Accessibility Issues at Home from 2021-11-22T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how All Wheels Up recently celebrated the release of a transportation review board study that showed the feasibility of accessible...
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New Spinraza Delivery Technique for Patients & How To Refer to Someone With a Disability from 2021-11-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how administering Spinraza by subcutaneous intrathecal catheter improved upper limb function in some spinal muscu...
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#94: Interview With Pamela K. Muhammad, Author and Entrepreneur With SMA from 2021-11-16T00:00
In episode 94, host Kevin Schaefer talks with Pamela K. Muhammad from Monroe, Louisiana. Pamela is the author of two books, and she is currently in the process of launching her own fashion accessor...
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Anxiety and Depression Common Among School-Age SMA Patients in China & Facing SMA Challenges from 2021-11-15T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study in China suggests a high prevalence of anxiety and depression among school-age children and adolescents with spinal mu...
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Belgian Newborn Screening Pilot for SMA Becomes Official & Getting Through Physical Therapy with SMA from 2021-11-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge discusses how a pilot of newborn screening for spinal muscular atrophy in Liege province became in 3 years a government-run program for South...
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SMA Doesn't Stop Teen From Pursuing Academic Dreams & How To Make A More Accessible World from 2021-11-08T00:00
SMA News Today’s multimedia associate, Price Wooldridge, shares the story of Ben Lou, an 18-year-old with SMA type 2, mentally as strong as they come: accepted to three top US universities, and tha...
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Cure SMA Advocates for Better Wheelchair Storage for Air Travel & SMA Issues Can Be Overwhelming from 2021-11-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how in an open letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair storage for...
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#93: Interview With Garrett Lerner, Co-creator and Executive Producer of NBC Series “Ordinary Joe” from 2021-11-02T00:00
In episode 93, host Kevin Schaefer talks with Garrett Lerner from Los Angeles, California. Garrett is the co-creator and co-showrunner of the NBC drama series “Ordinary Joe,” and he is a father to ...
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Canadian Agency Favors Zolgensma Only for Babies Up to 6 Months Old & Sometimes SMA Is Just Too Much from 2021-11-01T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how a Canadian agency found evidence lacking to support gene therapy reimbursement in older babies and toddlers w...
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Phase 3 Apitegromab Trial Planned for Non-ambulatory Types 2 And 3 & Latest Topics on Our Forums from 2021-10-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article on how Scholar Rock plans to initiate a Phase 3 trial of apitegromab in spinal muscular atrophy types 2 and 3 patients ...
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Neurofilament Blood Levels Likely to Predict Treatment Response in SMA from 2021-10-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a news article on how blood levels of phosphorylated neurofilament heavy chain, nerve cell damage marker, are related to greater m...
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Quality of Life Survey Aims to Help Inform SMA Community Needs & Situations That Could’ve Gone Wrong from 2021-10-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the SMA News Today article, “New Quality of Life Survey Aims to Help Inform SMA Community Needs”.
Also, over on the forums th...
#92: Discussing Disability and Employment from 2021-10-19T00:00
In episode 92, host Kevin Schaefer talks with fellow SMA News Today contributors to discuss each other’s work experiences. October is recognized in the United States as National Disability Employme...
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Pre-symptomatic Infants Retain Swallowing Ability in Evrysdi Trial from 2021-10-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads an article on how pre-symptomatic infants with SMA have retained the ability to swallow after being treated with Evrysdi for at least ...
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Spinraza RESPOND Trial Enrolling Children Not Helped by Zolgensma from 2021-10-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) children not helped by Zolgensma, are being enrolled in the Spinraza RESPOND trial.
Plu...
Low Bone Density Puts SMA Children in China at Risk for Fractures & DeAnn Runge's Favorite Hobbies from 2021-10-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how low bone density puts Spinal Muscular Atrophy (SMA) children in China at risk for fractures.
Plus, DeAnn Runge talks ...
Certain Abilities Decline in SMA Children Unable to Walk & Gaming to Find Accessibility from 2021-10-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how certain abilities decline in Spinal Muscular Atrophy (SMA) children who are unable to walk. In a world that can be less than a...
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#91: Interview with Blake Watson, Web Designer and Developer from 2021-10-05T00:00
In episode 91, host Kevin Schaefer talks with Blake Watson from Byram, Mississippi. Blake is a web designer and developer. He is currently a member of the frontend dev team at MRI Technologies, wor...
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#91: Blake Watson, Web Designer and Developer from 2021-10-05T00:00
In episode 91, host Kevin Schaefer talks with Blake Watson from Byram, Mississippi. Blake is a web designer and developer. He is currently a member of the frontend dev team at MRI Technologies, wor...
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Trial of Spinraza at High Dose for Patients Who Have Used Evrysdi & Dealing With Your Period from 2021-10-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a trial planned of Spinraza at high dose in Spinal Muscular Atrophy (SMA) patients who have used Evrysdi.
Read the news articl...
Blood NfL Levels May Mark SMA Severity, Therapy Efficacy in Very Young from 2021-09-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how blood neurofilament light chain (NfL) levels may mark Spinal Muscular Atrophy (SMA) severity and therapy efficacy.
Al...
Variant in Androgen Receptor Might Be Useful in Treating SBMA from 2021-09-27T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a variant of an androgen receptor protein which may be useful in treating Spinal and Bulbar Muscular Atrophy (SBMA).
Also...
Cure SMA And Cytokinetics Renew Joint Efforts to Raise Funds and Awareness from 2021-09-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Cure SMA and Cytokinetics renew their joint efforts to raise funds and awareness for Spinal Muscular Atrophy (SMA).
<...
#90: Interview With Judy Heumann, Disability Rights Activist from 2021-09-21T00:00
In episode 90, host Kevin Schaefer talks with Judy Heumann, who’s originally from Brooklyn, New York. A pioneer of the disability rights movement, she is one of the primary subjects of the 2020 Net...
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SMA Caused by Mutation in ASAH1 Gene Reported in Romania from 2021-09-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a first-ever case in Romania of Spinal Muscular Atrophy (SMA) caused by a mutation in the ASAH1 gene.
Plus, DeAnn Runge t...
2 SMN2-targeting Therapies Work Better Than 1 in Mouse Model from 2021-09-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how, according to a mouse model, two SMN 2 targeting therapies work better than one.
Also, heading into the weekend, DeAn...
Indigenous Groups in Canada May Have Highest Rate of SBMA in World from 2021-09-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses indigenous groups in Canada having the highest rate of spinal and bulbar muscular atrophy (SBMA) in the world.
DeAnn Rung...
Mothers Want to Improve Children’s Quality of Life & Making Friends as an Adult With SMA from 2021-09-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how mothers of Spinal Muscular Atrophy (SMA) children and adolescents what to improve their children’s quality of life.
D...
#89: Interview with Carole St-Laurent, A Children’s Author With SMA from 2021-09-07T00:00
In episode 89, host Kevin Schaefer talks with Carole St-Laurent from Quebec, Rimouski. Carole is the author of multiple children’s books, for which she writes under the name Rainbow Gal. She talks ...
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$1M Raised for ‘SpawnTogether,’ Disabled Gamers Project & DeAnn's Jaco Robotic Arm from 2021-09-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how $1 million has been raised by a Spinal Muscular Atrophy (SMA) patient for a disabled gamers project.
Also, DeAnn Rung...
Some SMA Patients Unable to Walk Unassisted May Have Trouble Chewing from 2021-09-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how some Spinal Muscular Atrophy (SMA) patients unable to walk unassisted may have trouble chewing.
And to close out SMA ...
Behind-the-Scenes of #31DaysofSMA from 2021-08-31T00:00
#InstagramLive? here: https://www.instagram.com/tv/CTBDgwbBFm5/
Ally Macgregor chats with Kevin Schaefer (@kevinschaefer19), Katie Napiwocki (@wheelprintsalongthewildflowers) and Samantha ...
SMA UK Network Helps Patients Navigate Adulthood from 2021-08-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses an SMA UK network which helps patients navigate adulthood, living longer, attending college, pursuing careers, and traveling more....
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Most Parents Surveyed in Japan Support SMA Newborn Screening from 2021-08-27T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Japan and it’s support by most parents surveyed.
Plus, not only do...
SMA Type 1 Affects Sensory Nerves as Children Age, Small Study Shows from 2021-08-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) Type 1 affects sensory nerves as children age.
Plus, Kevin Schaefer reads a column by A...
‘Best Possible Outcome’ for SMA? Newborn Screening, Then Zolgensma from 2021-08-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the best possible outcome for infants with Spinal Muscular Atrophy (SMA) is newborn screening, then Zolgensma, according to a cost...
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Zolgensma Helps Mobility of SMA Children in Qatari Real-world Study from 2021-08-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the gene therapy Zolgensma helps improve mobility in young children with Spinal Muscular Atrophy (SMA) in a real-world study.<...
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FDA Lifts Hold on Clinical Trials of Intrathecal OAV-101 & Self-Acceptance and Rejecting Ableism from 2021-08-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA lifting its partial hold on clinical trials of Intrathecal OAV-101 for the treatment of Spinal Muscular Atrophy (SMA).
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#88: SMA Awareness Month & 31 Days of SMA 2021 from 2021-08-17T00:00
In episode 88, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and Katie Napiwocki. They discuss this year’s 31 Days of SMA campaign, as well as other topics and ne...
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Zolgensma-Evrysdi Combo Likely Beneficial for SMA Type 1 from 2021-08-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Zolgensma-Evrysdi combination is likely beneficial for patients with Spinal Muscular Atrophy (SMA) Type 1.
Also, ...
Inviting People to Sit at the Table of My Disabled Life & 31 Days of SMA Thus Far from 2021-08-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Katie Napiwocki, A Wildflower in the Wheelderness, “Inviting People to Sit at the Table of My Disabled Life”.
A...
Muscular Dystrophy Canada Funds Projects on Newborn SMA Screening from 2021-08-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the award of funds by Muscular Dystrophy Canada for Spinal Muscular Atrophy (SMA) newborn screening.
Also, Kevin Sch...
Spinraza Improves Lung Function in SMA Type 2 Child, Report Says from 2021-08-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses improved lung function with Spinraza in a Spinal Muscular Atrophy (SMA) Type 2 child.
Also, As DeAnn Runge awaits the arr...
Why My Journey With Disability Pride Isn’t Linear & 31 Days of SMA Initiative from 2021-08-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup at a Time, “Why My Journey With Disability Pride Isn’t Linear”.
Also, in recognitio...
Novartis Stopping Work on Branaplam as Oral SMA Therapy & 31 Days of SMA from 2021-08-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis stopping work on the development of Branaplam as an oral treatment for Spinal Muscular Atrophy (SMA).
Forums Dir...
#87: Interview with Allie Williams, Vocal Coach and Disability Advocate from 2021-08-03T00:00
In episode 87, host Kevin Schaefer talks with Allie Williams from Stillwater, Oklahoma. Allie is a vocal coach and she has SMA Type II. She talks about her lifelong musical journey, dealing with ac...
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Early Work Supports Apitegromab’s Safety as SMA Muscle Therapy & Jaco Robotic Arm Approval from 2021-08-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses early work that supports Apitegromab’s safety as a Spinal Muscular Atrophy (SMA) therapy.
Also, after a yearlong battle D...
SadBaby Crowdfunding Aims to Help SMA Families & Accessibility, Disability Pride and Success from 2021-07-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses SadBaby, an organization raising donations to support children with Spinal Muscular Atrophy (SMA).
Also, SMA News Today c...
Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds from 2021-07-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a partnership which aims to lower out-of-pocket costs for rare disease medications.
Also, Forums Director Kevin Schaefer ...
‘Wearable Cyborg’ Helps Improve Walking Ability And Muscle Strength from 2021-07-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a wearable cybernetic leg significantly improves walking ability for people with neuromuscular disabilities such as Spinal Mus...
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VRK1 Mutations Were Found in Two Adult-Onset SMA Hispanics & the SSI Restoration Act of 2021 from 2021-07-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how VRK1 mutations were found in two adult-onset Spinal Muscular Atrophy (SMA) Hispanics.
In the forums there are a lot of gre...
COVID-19 Infection Turns Severe in SMA Type 1 Child & Treating Your Body Right from 2021-07-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a COVID-19 infection turns severe in a Spinal Muscular Atrophy (SMA) Type 1 child.
News article: https://smanewstoday.com/...
#86: Price Wooldridge, The Voice Behind the SMA Flash Briefings from 2021-07-20T00:00
In episode 86, host Kevin Schaefer talks with Price Wooldridge from Fort Worth, Texas. Price is a voiceover contributor for the SMA News Today flash briefings, and he lives with a rare autoimmune d...
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Sma Treatment May Be More Effective by Altering an Underlying Molecule & Having a Service Dog from 2021-07-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) treatment may be more effective by altering an underlying molecule.
DeAnn Runge shares ...
Spinraza Improves Motor Function in Children And Adults With SMA Type 3 Children from 2021-07-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in Spinal Muscular Atrophy (SMA) Type 3 children.
In recognition of Disability Pri...
Stem Cell Therapy May Benefit Some Type 1 Infants & Disability Pride Month from 2021-07-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a stem cell therapy which may benefit some Spinal Muscular Atrophy (SMA) Type 1 infants.
Also, Kevin Schaefer shares his ...
People in UK Urged to Sign Petition Adding SMA to Newborn Screening from 2021-07-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the UK SMA Newborn Screening Alliance calling on people to take action and sign a petition requesting Spinal Muscular Atrophy (SMA...
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US Pediatricians Often Overlook Steps in Diagnosing SMA, Surveys Show from 2021-07-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how many U.S. pediatricians fail to use developmental screening tools in diagnosing Spinal Muscular Atrophy (SMA).
Plus, ...
Texas Adds SMA to Its Newborn Screening Program from 2021-07-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Texas adding Spinal Muscular Atrophy (SMA) to its newborn screening program.
Also, Forums Director Kevin Schaefer reads a...
#85: Interview With Mikey and Noelle Hazel, Siblings with SMA from 2021-07-06T00:00
In episode 85, host Kevin Schaefer talks with Mikey and Noelle Hazel from Union, New Jersey. Mikey and Noelle are siblings who both have SMA Type II. They talk about growing up with SMA together, c...
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Japan Approves Evrysdi as First At-home, Oral SMA Treatment from 2021-07-05T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Japan’s approval of Evrysdi as the first at-home, oral Spinal Muscular Atrophy (SMA) treatment.
Also, DeAnn Runge talks a...
Major Developmental Milestones Met in Infants, Zolgensma Data Show from 2021-07-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma treatment demonstrating major milestones being met in infants with Spinal Muscular Atrophy (SMA).
Also, DeAnn s...
Newborn Screening in Massachusetts Seen as Highly Accurate And Effective from 2021-06-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Massachusetts being seen as highly accurate and effective.
Forums ...
Spinraza Leads to Better Swallowing, Farther Walking & Weekly Wins: Sharing Wins in Our Forums from 2021-06-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses children with Spinal Muscular Atrophy (SMA) taking Spinraza, leanding to better swallowing and farther walking.
Also, not...
Apitegromab Safely Increases Motor Abilities in SMA Types 2, 3 from 2021-06-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses meaningful improvements in motor abilities evident with apitegromab treatment in later-onset Spinal Muscular Atrophy (SMA) patient...
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Evrysdi Linked to Improved Motor Function in 2 Trials & Finding Community Support from 2021-06-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA).
Also, ...
SMA Added to North Carolina’s Newborn Screening Program from 2021-06-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses adding a Spinal Muscular Atrophy (SMA) newborn screening program in North Carolina.
Also, DeAnn Runge shares, Halsey Bloc...
NICE Favors Zolgensma Being Added to England’s Public Health Program from 2021-06-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients.
For the second time the C...
Navigating the Past Year Without Caregivers Has Been Challenging from 2021-06-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “Navigating the Past Year Without Caregivers Has Been Challenging”.
Als...
#84: Scholar Rock Updates and Embracing the Growing Pains of New Wheels from 2021-06-15T00:00
In episode 84, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news ...
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NICE Initially Against Adding Evrysdi to UK Public Health System from 2021-06-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s NICE recommending against adding Evrysdi to the UK’s Public Health System.
Also, DeAnn Runge reads Katie Napiwo...
SMA and Sibling Relationships: A Brother’s Perspective & Sticking With Evrysdi from 2021-06-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “SMA and Sibling Relationships: My Brother’s Perspective”.
Also, DeAnn Runge...
Asuragen’s Lab Test Can Speed Up Diagnosis of SMA Carriers and Patients from 2021-06-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Asuragen’s lab test which can speed up diagnosis of SMA carriers and patients.
Also, Forums Director Kevin Schaefer reads...
Stress-induced Protein May Serve as New SMA Biomarker in Infants from 2021-06-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a stress-induced protein may serve as a new Spinal Muscular Atrophy (SMA) biomarker in infants.
Also, SMA News today ...
Apitegromab, Muscle-directed Therapy for SMA, Put on FDA Fast Track from 2021-06-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab being granted a fast track designation by the U.S. Food and Drug Administration.
DeAnn Runge talks about her ...
SMN2 Copy Number and Rare Variant Influence SMA Severity from 2021-06-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the SMN2 copy number and a rare genetic variant influence the severity of Spinal Muscular Atrophy (SMA).
Also, Forums...
#83: Interview with Christine Getman and Scottie Foertmeyer, Couple and Magic Wheelchair Executives from 2021-06-01T00:00
In episode 83, host Kevin Schaefer talks with Christine Getman and Scottie Foertmeyer from Portland, Oregon. Christine and Scottie are partners in life and in business, as they run the nonprofit Ma...
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SMA May Carry Higher Risk of Fluid Buildup in The Brain & Reflections on Memorial Day from 2021-05-31T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy may carry a higher risk of fluid buildup in the brain.
Also, DeAnn Runge shares her reflectio...
Apitegromab Safely Counters a Muscle Growth Suppressor in Patients With SMA from 2021-05-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Apitegromab safely counters a muscle growth suppressor in patients with Spinal Muscular Atrophy (SMA).
Also, DeAnn Ru...
Cure SMA Offers US Patients Free Tools to Boost Their Independence & Managing Fatigue With SMA from 2021-05-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses free tools being offered by Cure SMA to boost the independence of Spinal Muscular Atrophy (SMA) patients.
Also, Forums Di...
Remembering to Prioritize Mental Health & Self-Esteem, Post Vaccination Plans and More from 2021-05-24T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “I’m Remembering to Prioritize My Mental Health”.
DeAnn Runge talks abou...
Neurofilaments May Not Be Biomarker for Older Patients & The New CDC Mask Recommendations from 2021-05-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how neurofilaments may not be a biomarker for older patients with Spinal Muscular Atrophy (SMA) Type 1.
Also, DeAnn Runge...
Warning of TMA, Rare Blood Disorder, Added to Zolgensma’s Safety Label & Friendships and SMA from 2021-05-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses adding thrombotic microangiopathy (TMA) to the list of safety concerns for Zolgensma.
Also, Forums Director Kevin Schaefe...
#82: Interview with Hawken Miller, Journalist with Muscular Dystrophy from 2021-05-18T00:00
In episode 82, host Kevin Schaefer talks with Hawken Miller from Newport Beach, California. Hawken is a features writer for SMA News Today’s parent company, BioNews, as well as a columnist for Musc...
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Sex And The Number of Copies of The SMN 2 Gene Can Influence Age of Onset for SMA Type 3 Patients from 2021-05-17T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how sex, and the number of copies of the SMN 2 gene influence age of onset for Spinal Muscular Atrophy Type 3 patients.
A...
UK NICE Expands Access to Spinraza for SMA Type 3 & The Disappointment of a Jaco Robotic Arm Denial from 2021-05-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how UK NICE expands access to Spinraza for Spinal Muscular Atrophy (SMA) Type 3 patients.
Also, DeAnn Runge talks about h...
German Study Urges Newborn SMA Screening, Citing Better Outcomes & Managing Chaos from 2021-05-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a German study which recommends newborn screening for Spinal Muscular Atrophy (SMA), citing better outcomes.
Also, Forums...
Grant Awarded to Find Affordable Treatments for Children & SMA Would You Rather from 2021-05-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a grant awared to find affordable treatments for children with Spinal Muscular Atrophy (SMA).
Also, on the forums a fun g...
Novartis Poised for Phase 3b SMART Study of Zolgensma & SMA Adventures from 2021-05-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis is poised for their Phase 3b SMART study of Zolgensma.
Also, DeAnn Runge shares a recent adventure she went ...
Danish Family Races to Raise $2.4M for Daughter’s Zolgensma Therapy & Staying True To Yourself from 2021-05-05T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Danish family raising $2.4 million for their daughter’s Zolgensma therapy.
Also, Kevin Schaefer reads a column about st...
#81: Interview With Chaz Hayden - Writer and YouTuber with SMA from 2021-05-04T00:00
In episode 81, host Kevin Schaefer talks with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a young age, an...
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#AANAM – Zolgensma May Lead to Faster, Greater Gains Than Spinraza from 2021-05-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma may lead to faster, greater gains than Spinraza in Spinal Muscular Atrophy (SMA) infants.
Also, DeAnn Runge...
Neurofilaments Before Spinraza May Predict Motor Improvements & Reviewing The Sound of Metal from 2021-04-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses neurofilaments, before beginning Spinraza, may predict motor improvements in children with Spinal Muscular Atrophy (SMA).
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Health Canada Approves Evrysdi for At-home Treatment from 2021-04-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Health Canada’s approval of Evrysdi for at-home treatment in SMA patients.
Also, Forums Director Kevin Schaefer reads a c...
Immune Response to Zolgensma Can Be Common in Older SMA Children from 2021-04-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the immune reponse to Zolgensma can be common in older Spinal Muscular Atrophy (SMA) children.
Also, SMA News Today conte...
Prenatal Enrollment Yields Faster Results from Newborn Screening from 2021-04-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses prenatal enrollment of newborns for Spinal Muscular Atrophy (SMA) leads to faster results and speedier treatments.
Also, ...
Apitegromab Improving or Stabilizing Motor Function in Children And Young Adults With Small from 2021-04-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab improving or stabilizing motor function in children and young adults with Spinal Muscular Atrophy (SMA).
Foru...
#80: Updates on Apitegromab and Discussing SMA Columns from 2021-04-20T00:00
In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss updates on Scholar Rock’s treatment, Apitegromab, as well as other news...
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European Alliance Calls for Newborn Screening & Allergy Season, Sleep Solutions and SMA Treatments from 2021-04-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the European Alliance for Newborn Screening calling on all European states to introduce routine screening for all newborns for Spi...
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Architecture Of The SMN Complex Is Altered In People With SMA & Comparing Wheel Drive Wheelchairs from 2021-04-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the architecture of the SMN complex, which is altered in people with Spinal Muscular Atrophy (SMA).
Also, throughout her ...
Spinal Fluid Changes With Spinraza’s Use Mild, Possibly Due to Lumbar Puncture from 2021-04-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA).
Also, Kevin Schaefer reads a col...
Evrysdi Approved in Europe as First Oral, At-home Treatment & The Evrysdi Chronicles from 2021-04-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge re...
Benefits of SMA Newborn Screening Outweigh Disadvantages In New Survey & Everyday Struggles With SMA from 2021-04-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the benefits of Spinal Muscular Atrophy (SMA) newborn screening outweighing the disadvantages.
After watching a YouTube v...
#79: Interview With Ainaa Farhanah, a Graphic Designer Living with SMA from 2021-04-08T00:00
In episode 79, host Kevin Schaefer talks with Ainaa Farhanah from Kuala Lumpur, Malaysia. Ainaa is a graphic designer and art teacher with SMA. She talks about growing up with SMA, family, college,...
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Scholar Rock Wins US Patent for Apitegromab & Receiving The COVID-19 Vaccine And Getting Outside from 2021-04-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock winning a U.S. patent to Apitegromab for treating Spinal Muscular Atrophy (SMA).
Also, Kevin Schaefer talks ...
Zolgensma Helped Pre-symptomatic Babies Achieve Age-Appropriate Motor Milestones from 2021-04-05T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma helped pre-symptomatic babies with Spinal Muscular Atrophy (SMA) achieve age-appropriate motor milestones.
...
Zolgensma Continues to Prevent Motor Function Decline for 5 Years from 2021-04-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgenzma continues to prevent motor function decline for five years for patients with Spinal Muscular Atrophy (SMA).
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Evrysdi Leads to Longer-term Benefits for SMA Types 2, 3, Data Show from 2021-03-31T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi leads to longer-term benefits for Spinal Muscular Atrophy (SMA) patients, Types 2 and 3.
Forums Director Kevi...
Zolgenzma Found To Be Safe And Effective in SMA Toddlers & The Importance of Schedules And Routines from 2021-03-29T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being found safe and effective in Spinal Muscular Atrophy (SMA) toddlers.
Also, DeAnn Runge welcomes new listen...
Evrysdi Safe in SMA Patients Previously Given Other Therapies & The Evolution of Technology from 2021-03-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how treatment with Evrysdi is safe in Spinal Muscular Atrophy (SMA) patients previously given other therapies.
DeAnn Rung...
SMA Foundation and PTC Joint Efforts to Fund Regenerative Medicine Research from 2021-03-24T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA Foundation and PTC Therapeutics joint efforts to fund regenerative medicine research.
Also, Forums Director Kevin...
Reldesemtiv Aids Motor and Respiratory Strength in Types 2 and 3, Early Trial Finds from 2021-03-22T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the therapy, Reldesemtiv, aids motor and respiratory strength in Spinal Muscular Atrophy (SMA) Types 2 and 3.
Also, ...
Zolgensma Available Soon to Eligible SMA Type 1 Patients in England, Scotland from 2021-03-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being added to the list of eligible medications for Spinal Muscular Atrophy (SMA) Type 1 patients in England and Scotlan...
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Muscles Controlling Eye Movements Not Affected by SMA & Never Give Up Searching for Your Advocates from 2021-03-17T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how adults with Spinal Muscular Atrophy (SMA) usually don’t experience weakness or impairment of eye muscles.
Forums Dire...
#78: Discussing Switching Treatments, News Stories, and Recent Columns from 2021-03-16T00:00
In episode 78, host Kevin Schaefer talks with fellow SMA News Today contributor and Senior Director Michael Morale. They discuss Michael’s decision to switch back to Spinraza, treatment updates, an...
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The Challenges Of Life as a Teen And Young Adult With SMA & Being Denied Access to SMA Treatment from 2021-03-15T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the challenges of life as a teen and young adult with Spinal Muscular Atrophy (SMA).
Also, SMA News Today content creator...
CHMP Favors EU Approval of Evrysdi as 1st Oral, At-home SMA Treatment & Discussing GI Issues from 2021-03-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Committee for Medicinal Products for Human Use (CHMP) approval of Evrysdi as the first oral, at-home Spinal Muscular Atrophy (...
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Evrysdi Seen to Improve Survival, Motor Development of Infants with SMA Type 1 from 2021-03-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi improving survival and motor development in infants with Spinal Muscular Atrophy Type 1.
Forums Director Kevin Sc...
Mother Raises 4 Adopted Girls From China With SMA, Chronic Illnesses from 2021-03-08T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a mother who has adopted and is raising four girls from China with Spinal Muscular Atrophy (SMA).
Also, a variety of topi...
Brain Involvement in SMA Type 1 Still Poorly Understood & Struggling to Personalize New Wheelchair from 2021-03-05T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses why brain involvement in Spinal Muscular Atrophy Type 1 is still poorly understood.
Also, DeAnn Runge talks about how she...
Study Finds Varying Perspectives From Parents on Spinraza Therapy for Children from 2021-03-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the varying perspectives from parents on Spinraza therapy for their children.
Forums Director Kevin Schaefer reads a colu...
#77: Interview With Jeremy Camp, SMA Parent and Advocate from 2021-03-02T00:00
In episode 77, host Kevin Schaefer talks with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his...
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New SMN-boosting Molecule Shows Promise as Add-on Therapy & Rare Disease Day and New Forums Topics from 2021-03-01T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new SMN-boosting molecule which shows promise as an add-on therapy for Spinal Muscular Atrophy (SMA).
Also, Rare Diseas...
Rare Case of SMA Linked With Myoclonic Epilepsy Detailed in Report from 2021-02-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a rare case of Spinal Muscular Atrophy linked with a progressive myoclonic epilepsy.
Balancing mind and body can be trick...
Assistive Devices Should Be Standard in Managing SMA Type 1 & I’m Grateful for My Friends from 2021-02-24T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses assistive devices which should be standard in managing Spinal Muscular Atrophy (SMA) Type 1.
Forums Director Kevin Schaef...
Quantitative MRI Is Sensitive Measure of Muscle Decline from 2021-02-22T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses quantitative MRI imaging showing itself to be a sensitive measure of decline in young adults with Spinal Muscular Atrophy (SMA).
Spinraza Improves Motor Function in Case of Teenager with Late-onset SMA from 2021-02-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in the case of a teenager with late-onset Spinal Muscular Atrophy (SMA).
SMA News To...
A ‘Miracle’: Spinraza Gives Boy a Chance to Grow Up & Life Is an Adventure, So Let’s Be Pioneers from 2021-02-17T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a “miracle” when Spinraza gives a boy, now 5 years old, a chance to grow up fast and show good progress.
Also, forums Dir...
#76: Discussing Treatment Updates, Vaccine Access, and Recent Columns from 2021-02-16T00:00
In episode 76, host Kevin Schaefer talks with fellow SMA News Today contributor DeAnn Runge. They discuss news regarding increasing the dosage of Spinraza in SMA patients, updates on Scholar Rock’s...
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EMBRACE Trial Supports Spinraza’s Benefits in Broad Range of SMA Patients from 2021-02-15T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the EMBRACE Trial which supports Spinraza’s benefits in a broad range of Spinal Muscular Atrophy (SMA) patients.
Also, De...
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns from 2021-02-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the National Organization for Rare Disorders (NORD) 6th “state report card”, noting progress, but raising concerns.
Plus,...
Rare Disease Groups, Pharmas Join SMA Europe Push for Newborn Screening from 2021-02-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses rare disease groups and pharmaceutical companies, joining SMA Europe in a push for newborn screening for Spinal Muscular Atrophy (...
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Motor Function, Breathing Important in Choosing Treatment from 2021-02-08T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses improvement in motor function, breathing, and ease of administration are important factors when Spinal Muscular Atrophy (SMA) pati...
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More Severe COVID-19 Symptoms Seen in Children with SMA Type 1 from 2021-02-05T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses more severe COVID-19 symptoms being seen in children with Spinal Muscular Atrophy (SMA) Type 1.
Also, vlogger and forums ...
Better Ways of Capturing Progression in Types 2 and 3 Identified in Study from 2021-02-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses better ways of capturing progression of motor abilities in Spinal Muscular Atrophy (SMA) Types 2 and 3.
Forums Director K...
#75: Alvaro Cheherlian, Founder and CEO of Wrekt Svpply from 2021-02-02T00:00
In episode 75, host Kevin Schaefer talks with Alvaro Cheherlian from Sylmar, California. Alvaro is the founder and CEO of Wrekt Svpply, a clothing brand company. He talks about building his busines...
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Cure SMA Booklet Outlines Possible Risks, Benefits of Combining Treatments from 2021-02-01T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining treatments for Spinal Muscular Atrophy (SMA).
...
TOPAZ Trial Results on Muscle Therapy Likely by June, Scholar Rock Says from 2021-01-29T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal Muscular Atrophy (SMA).
Plus, staying ...
Resolutions, Mindsets and Emotions & Transitioning SMA Patients From Older To Newer Wheelchairs from 2021-01-27T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “Advice From a Life Coach: Resolutions, Mindsets, and Emotions”.
Forums Dire...
Online for 2021, Team Cure SMA Race Series Planning Variety of Events from 2021-01-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Team Cure SMA endurance race series moving online in the current pandemic, and expecting more people to join.
Also, V...
Zolgensma Approved to Treat Young SMA Patients in Canada from 2021-01-22T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Spinraza Phase 4 trial to treat children who failed to respond to gene therapy.
DeAnn Runge shares her experience obta...
Keeping Your Child with SMA in School During the Cold and Flu Season & Soaring With Hope from 2021-01-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses strategies to keep your child with Spinal Muscular Atrophy (SMA) in school during the cold and flu season.
Forums Directo...
#74: Interview with Katie Napiwocki and Andy Rusch, Interabled Couple from 2021-01-19T00:00
In episode 74, host Kevin Schaefer talks with Katie Napiwocki and Andy Rusch from Wisconsin Rapids. Katie is a columnist for SMA News Today, and her partner Andy is also her primary caregiver. List...
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New Cure SMA Webinar Series to Focus on Health, Wellness & Let's Talk About Sex and SMA from 2021-01-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Cure SMA three-part webinar series on wellness topics for the Spinal Muscular Atrophy community.
Typically a taboo to...
Higher-dose Spinraza Trial Now Enrolling Part B After No Safety Issues Found from 2021-01-15T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a higher dose Spinraza trial now enrolling Part B after no safety issues were found.
Also, DeAnn Runge shares her persona...
This Year, I Want to Be Brave & The Challenges That Come With Pursuing Independence from 2021-01-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, The Wolf Finally Frees Itself, “This Year, I Want to Be Brave”.
Forums Director Kevin Schaefer ...
Informal SMA Caregivers Surveyed in Europe Report High Daily Burden & Relevant Topics On The Forums from 2021-01-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how non-professional caregivers who care for children with Spinal Muscular Atrophy (SMA) carry a high daily burden that negatively...
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Zolgensma Linked in 3 Cases to Serious But Treatable Blood Disorder from 2021-01-08T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma is linked in three cases to a serious but treatable blood disorder.
Are you interested in learning more ab...
Zolgensma Approved to Treat Young SMA Patients in Canada & Kidney Stone And a Trip To The ER from 2021-01-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma approval in Canada for the treatment of young Spinal Muscular Atrophy patients.
Also, Forums Director Kevin Sch...
#73: Interview With Tyler Dykema, Artist and Musician with SMA from 2021-01-05T00:00
In episode 73, host Kevin Schaefer talks with Tyler Dykema from Grand Rapids, Michigan. Tyler is an artist, musician, and punk rock connoisseur who has SMA Type II. He talks in this episode about g...
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Paramedian Injection Approach Found to Ease Spinraza Administration & Difficult On Getting Evrysdi from 2021-01-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses administering Spinraza (nusinersen) via a paramedian injection to shorten procedure times and reduce adverse events.
SMA ...
Ella Has Fun While Sheltering at Home & Stepping Into a New Me in the Year Ahead from 2021-01-01T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Fun While Sheltering at Home.
SMA News Today’s forum...
Being An Uncle With SMA and How This Role Can Change One's Life from 2020-12-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Made Big Gains Since Diagnosis Day.
SMA News Today’s...
Smart Tech Is Integral to My Quality of Life & 2020 Highlights from 2020-12-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, “The Wolf Finally Frees Itself”, Yes, Actually, Smart Tech Is Integral to My Quality of Life.
S...
Rising From the Ashes and Flying With Broken Wings & Finding My Voice In the Disability Community from 2020-12-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, reads a column by Hasley Blocher, “From Where I Sit”, Rising From the Ashes an Flying With Broken Wings.
SMA News Today’s forums mo...
Financial Burden of SMA Much Higher Than Other Conditions & The Mental Benefits of Physical Therapy from 2020-12-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the higher financial burden on Spinal Muscular Atrophy (SMA) patients, compared to other conditions.
SMA News Today’...
Measuring Neurological Impact of Polio Proves Useful in SMA, Study Reports from 2020-12-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how measuring the neurological impact of Polio proves useful in studying patients with Spinal Muscular Atrophy (SMA).
SMA...
Genetic Analysis of Families Finds Novel Mutations in SMA & The Lack Of Privacy When Living With SMA from 2020-12-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients...
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Zolgensma-associated Liver Abnormalities Common but Manageable & I’m Disappointed, and That’s OK from 2020-12-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manageable in children with Spinal Muscular Atrophy (S...
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#72: Evrysdi, Physical and Mental Health, and Highlights of 2020 from 2020-12-15T00:00
In episode 72, Kevin Schaefer and Michael Morale reflect on the craziness of 2020, and they highlight some of the key pieces of content SMA News Today created this year. They also discuss Michael’s...
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Neurological Alliance Report Calls for Better Treatment, Care for UK Patients from 2020-12-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. patients living with rare neurological conditions suc...
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Spinraza Linked to Temporary Abnormalities in Immune Cells in 2 SMA Infants from 2020-12-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Muscular Atrophy (SMA) infants.
SMA News T...
Extensive Trial Monitoring Confirms Evrysdi Does Not Damage Vision & The Series "Boy Meets World" from 2020-12-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how extensive trial monitoring confirms Evrysdi does not damage vision in children or adults with Spinal Muscular Atrophy (SMA).
Olesoxime Failed to Benefit SMA Type 2 and 3 Patients, Final Trial Data Show from 2020-12-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how olesoxime failed to benefit Spinal Muscular Atrophy (SMA) Type 2 and 3 patients in a final trial.
SMA News Today’s f...
Gene Therapy Given Directly to Spinal Canal Might Be Safer With ‘Silencing’ Step from 2020-12-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how gene therapy, given directly to the spinal canal, might be safer with a “silencing” step.
SMA News Today’s forums mod...
Exploring The Intersection of Identity and SMA from 2020-12-02T00:00
Forums Director Kevin Schaefer explores the intersection of identity and SMA in his latest column.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
#71: Interview with Kristen Resendez, SMA Parent and Advocate from 2020-12-01T00:00
In episode 71, host Kevin Schaefer talks with Kristen Resendez from Harlingen, Texas. Kristen’s son, Jack, has SMA, and she is an active member of the SMA community. During this conversation, she t...
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Spinraza Shown to Preserve Respiratory Muscle Strength in SMA Type 2 Patients from 2020-11-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study has shown Spinraza preserves respiratory muscle strength in Spinal Muscular Atrophy (SMA) Type 2 patients.
Ar...
Lung Health Declines in Step With Motor Loss in Types 2 and 3, Study Finds from 2020-11-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung health declines in step with motor loss in Spinal Muscular Atrophy (SMA) Types 2 and 3.
Are you interested in le...
Reflecting On The Insanity of 2020 and The People Who Got Us Through This Year from 2020-11-25T00:00
Forums Director Kevin Schaefer reflects on the insanity of 2020, and talks about the people who got him through this year.
To learn more about spinal muscular atrophy, visit our website a...
Spinraza’s Benefits Mild, Transient in Infant With Severe Type 0 SMA from 2020-11-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the mild, transient benefits of Spinraza treatment in an infant with severe, Type 0, Spinal Muscular Atrophy (SMA).
Are y...
Molecule Similar to Evrysdi But Possibly Safe at Higher Doses Identified from 2020-11-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a molecule similar to Evrysdi, is possibly safer at higher doses has been identified.
Are you interested in learning more...
How An Urology Appointment Turned Into A Fiasco & Typing Strategies, Vitamin D and Friendsgiving from 2020-11-18T00:00
Forums Director Kevin Schaefer talks about how a recent urology appointment turned into a bit of a fiasco. He describes this as an “SMA kind of day.”
Also, SMA News Today not only brings y...
#70 - Discussing the JACO Robotic Arm with Ron Borgschulte from 2020-11-17T00:00
In episode 70, host Kevin Schaefer and Michael Morale talk with entrepreneur Ron Borgschulte. Ron is the owner of Partners in Medicine, a company that works with Kinova Robotics to distribute assis...
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Muscle MRI Captures Spinraza’s Effects on Tissue Fibers in Type 3 Brothers from 2020-11-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a muscle MRI captures Spinraza’s effects on tissue fibers in two brothers with Type 3 Spinal Muscular Atrophy (SMA).
...
NICE Reviews UK Spinraza Reimbursement for SMA Type 3 Patients Unable to Walk from 2020-11-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) review of reimbursement for SMA Type 3 patients who are unable ...
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The Importance Of Balance While Maneuvering On Uneven Surfaces For People With SMA from 2020-11-11T00:00
Forums Director Kevin Schaefer reads from an article on our healthcare professional site, in which a physical therapist talks about the importance of balance while maneuvering on uneven surfaces fo...
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Muscle-directed Therapy SRK-015 Improves Motor Function in SMA Types 2 and 3 & Hibernation in Winter from 2020-11-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses muscle-directed therapy SRK-015 and improving motor function in Spinal Muscular Atrophy (SMA) Types 2 and 3.
DeAnn Runge ...
Evrysdi Approved in Brazil for Spinal Muscular Atrophy (SMA) from 2020-11-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Brazil for Spinal Muscular Atrophy (SMA).
Are you interested in learning more about spinal muscular...
Spending Time In & Out Of You Chair So You Give Your Body The Balance It Requires & Managing Stress from 2020-11-04T00:00
Forums Director Kevin Schaefer talks about spending time in and out of his chair, in order to give his body the balance it requires.
DeAnn Runge talks about a podcast she did with Kevin Sc...
#69 - Interview With Lamondre Pough from 2020-11-03T00:00
In this episode, host Kevin Schaefer talks with LaMondré Pough from Columbia, South Carolina. Lamondré is a public speaker, consultant, and advocate for people with disabilities. He currently serve...
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PAN Foundation Offers Financial Help for SMA Treatment & Routine Changes As Winter Sets In from 2020-11-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how people living with Spinal Muscular Atrophy (SMA) can apply for financial help for treatment to the PAN Foundation.
D...
Adults With SMA Who Sought Specialty Care After Spinraza Approval May Have More Severe Disease from 2020-10-30T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Adults with SMA who have sought specialty care after Spinraza’s approval, may have more severe disease.
Are you intereste...
Embracing The Imaginative Spirit of Halloween & Cold Feet, JACO Robotic Arm and Caregivers from 2020-10-28T00:00
Forums Director Kevin Schaefer reads from one of his older columns about embracing the imaginative spirit of Halloween.
Plenty of conversations are happening in the forums. In her recent c...
‘Think 3 at 3 Months’ Drive Seeks to Raise Awareness of Infant Movement Milestones & PCA Services from 2020-10-26T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the “Think 3 at 3 Months” drive, seeking to raise awareness of infant movement milestones that, if missed, could mean Spinal Muscu...
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SMA Type 3 Adults May Have Issues Regulating Component of Cell’s ‘Skeleton,’ Study Suggests from 2020-10-23T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 3 adults may have issues regulating a component of cell’s cytoskeleton, according to a study.
Are you interested...
How Memories Of a Dying Shopping Mall Made Kevin Schaefer About Adapting to Change from 2020-10-21T00:00
Forums Director Kevin Schaefer talks about memories of a dying shopping mall in his hometown, and how it made him think about adapting to change.
DeAnn Runge shares the latest column by Br...
#68 - Getting A New Wheelchair from 2020-10-20T00:00
In this episode, host Kevin Schaefer talks with DeAnn Runge, vlogger and forum moderator for SMA News Today.
DeAnn talks about acquiring her new service dog, Horton, and adapting to life ...
4-aminopyridine Fails to Improve Muscle Function in SMA Type 3 Patients & New Service Dog from 2020-10-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses 4-aminopyridine’s failure to improve muscle function in SMA Type 3 patients.
DeAnn Runge talks about how her new service ...
SMA Type 1 Infants Treated With Zolgensma Achieving Milestones, Data Show from 2020-10-16T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 1 infants, treated with Zolgensma, are achieving milestones.
Are you interested in learning more about spinal mu...
Spontaneous Trips, Reading, Socially Distant Celebrations, Delayed Deliveries & More from 2020-10-14T00:00
Forums Director Kevin Schaefer talks about a spontaneous trip he took on his 26th birthday last year, and the adventures that came from it.
A variety of topics are being discussed in the f...
Infants Receiving Evrysdi Continue to Improve and Achieve Motor Milestones from 2020-10-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestones in phase 2 and 3 trial data.
In light ...
Novartis to Open, at FDA Request, New Trial of Zolgensma for Older Patients from 2020-10-09T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients.
Are you interested in learning more about ...
How SMA Affects Your Ability to Draw, Treasuring Little Things & Setting Boundaries With Caregivers from 2020-10-07T00:00
Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things.
Recent topics being discussed in the SMA News Today forums incl...
#67 - Interview With Maylan Chavez from 2020-10-06T00:00
In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye tracking technology for people with disabil...
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Spinraza Leads To Motor Gains Over Time in SMA Type 3 Adults from 2020-10-05T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type 3 adults, according to a real-life study.
GridPad Trilogy Communication Device Aids People With Speech And Motor Disorders Who Have SMA from 2020-10-02T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor disorders who have Spinal Muscular Atrophy (SMA)...
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Kevin Schaefer Talks About How The Past Few Months Have Been And How He’s Adapted to a New Normal from 2020-09-30T00:00
Forums Director Kevin Schaefer talks about how the past few months have been for him, and how he’s adapted to a new normal.
To learn more about spinal muscular atrophy, visit our website a...
Electric Bike Technologies Donates Liberty Trikes To Aid The Mobility Of Children With SMA from 2020-09-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Electric Bike Technologies company donating Liberty Trikes to aid the mobility of children with Spinal Muscular Atrophy (SMA) ...
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AveXis Now Known as Novartis Gene Therapies, Focus of Continuing Work from 2020-09-25T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses AveXis, now known as Novartis Gene Therapies, focusing on continued work with genetic diseases.
Are you interested in lea...
Eye Doctor Appointment Adventures, How Everything Takes Extra Effort In The World Of SMA & More from 2020-09-23T00:00
Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the world of SMA.
DeAnn Runge talks about ...
NICE Widens Its Zolgensma Appraisal Due to European Marketing Authorization from 2020-09-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its Zolgensma appraisal due to the European marketing ...
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Activities Underway for Newborn Screening Awareness Month from 2020-09-18T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the activities currently underway for Newborn Screening Awareness Month.
Are you interested in learning more about spinal...
Experiences With a BiPAP Machine And The Pros And Cons of Wearing One & Wardrobe Challenges from 2020-09-16T00:00
Forums Director Kevin Schaefer talks about his experiences with a BiPAP machine, and the pros and cons of wearing one.
DeAnn shares Halsey’s latest column that talks about wardrobe challen...
#66: Talking About Evrysdi, SRK-015, and Recent Columns from 2020-09-15T00:00
In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. They also talk about the clinical...
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Nerve-Muscle Molecule May Be an SBMA Therapeutic Target & Getting a New Wheelchair and a Service Dog from 2020-09-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a nerve-muscle molecule may be an SBMA therapeutic target.
DeAnn Runge talks about being overwhelmed with getting a n...
Ohio Study Finds Zolgensma Safe and Effective, Particularly in Younger Infants from 2020-09-11T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Ohio study which finds Zolgensma safe and effective, particularly in younger infants.
Are you interested in learning ...
Comparing The Fictional Superhero Team The X-Men To The SMA Community & Getting Back To School from 2020-09-09T00:00
Forums Director Kevin Schaefer compares the fictional superhero team the X-Men to the SMA community in his latest column.
Recent forum topics include heading back to school even if that me...
FDA Grants Rare Pediatric Disease Designation to SRK-015 for SMA & Going to The Bathroom With SMA from 2020-09-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA granting “Rare Pediatric Disease” designation to SRK-015 for Spinal Muscular Atrophy (SMA).
DeAnn Runge talks abo...
SMA Registries Offer “Real-World Experience” That Makes The Best Treatment Possible from 2020-09-04T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how SMA registries offer “real-world experience” that makes the best treatment possible.
Are you interested in learning m...
A Digestive Dilemma & Some Of The Final Stories Featured in The 31 Days of SMA Campaign from 2020-09-02T00:00
Forums Director Kevin Schaefer provides an update on his digestive dilemma in his latest column.
DeAnn Runge shares some of the final stories featured in the 31 Days of SMA campaign.
...
#65 - Interview With Dwight Reed from 2020-09-01T00:00
In episode 65, host Kevin Schaefer talks with Dwight Reed from Virginia. Dwight is a father of three, and his youngest daughter has SMA Type 1. Dwight discusses his family life, engaging with the S...
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Muscle and Combo Therapies Likely Next Focus for SMA & DeAnn Runge's 3 Year Journey With Spinraza from 2020-08-31T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the likely next focus of muscle and combo therapies for Spinal Muscular Atrophy (SMA).
DeAnn Runge shares her thoughts on...
SMA Debate: Might Systemic Treatment Be Best? from 2020-08-28T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA debate: might systemic treatment be best?
Are you interested in learning more about spinal muscular atrophy? If ...
31 Days of SMA Story: Resilience and SMA from 2020-08-26T00:00
Forums Director Kevin Schaefer reads from a recent 31 Days of SMA story. Contributor Andres Gonzalez focuses on the topic of resilience and SMA.
DeAnn Runge summarizes a handful of stories...
#64 - Roundtable Podcast Discussion on Technology from 2020-08-24T00:00
In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies include electric wheelchairs, Amazon Echo devices...
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61 Year Old With SMA Type 3 Says With Evrysdi “Every Day is Good” from 2020-08-24T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the story from a 61 year old with SMA Type 3, who says, with Evrysdi, “every day is good”.
DeAnn Runge talks about puttin...
Evrysdi and Spinraza Target The SMN2 Gene, But in Different Ways from 2020-08-21T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi and Spinraza target the SMN2 gene, but in different ways.
Are you interested in learning more about spinal mu...
The Joy of Always Learning, Evrysdi (risdiplam) & Two Different Perspectives on Education from 2020-08-19T00:00
Forums Director Kevin Schaefer talks about the joy of always learning in his latest column.
On the forums Evrysdi (risdiplam) is still a hot topic. Also, two of the featured 31 Days of SM...
Expertise in RNA Biology at Core of PTC’s Formative Work With Evrysdi from 2020-08-17T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the expertise in RNA biology at the core of PTC’s formative work with Evrysdi.
DeAnn Runge talks about the considerations...
Evrysdi Has Parents “Totally Optimistic” For The Future of Their Boy With SMA Type 2 from 2020-08-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi has parents “totally optimistic” for the future of their boy with SMA Type 2.
Are you interested in learning ...
Frequently Asked Questions About Evrysdi (Risdiplam) & Great Stories From 31 Days of SMA from 2020-08-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses frequently asked questions about Evrysdi (Risdiplam).
Patients needing information can also go online at Evrysdi.com, or ...
FDA Approves Risdiplam, Now Known as Evrysdi, The First Oral Treatment For All SMA Types from 2020-08-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA approval of risdiplam, now known as Evrysdi, as the first oral treatment for all SMA types.
This flash briefing i...
Plans Advance for Biomarkers Panel to Assess Drug-induced Skeletal Muscle Injury from 2020-08-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses plans being advanced for a biomarkers panel to assess drug-induced skeletal muscle injury in SMA.
Are you interested in l...
#63 - Interview With Hugo Trevino from 2020-08-06T00:00
In episode 63, host Kevin Schaefer talks with Hugo Trevino from Chicago, Illinois. Hugo is a disability advocate and an academic advisor for students with disabilities at the University of Illinois...
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The First Few Days of The 31 Days of SMA Initiative & A Story On Dating and Disability from 2020-08-05T00:00
Forums Director Kevin Schaefer reads from one of the stories from our 31 Days of SMA initiative. This story focuses on dating and disability. Also, DeAnn Runge gives an overview of the first few da...
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Greatest Loss of Motor Skills at Ages 5 to 13 In SMA Type 2 Patients & Wheelchair Evaluation from 2020-08-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the greatest loss of motor skills at ages 5 to 13 in SMA Type 2 patients.
Now that DeAnn Runge had her wheelchair evaluat...
Biogen is Planning to Launch a First Trial, Testing Spinraza in Children Previously Given Zolgensma from 2020-07-31T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the news Biogen is planning to launch a first trial, testing Spinraza in children previously given Zolgensma.
Are you int...
Thinking Ahead, Disability vs. Disease & Diverse Reading Selections from 2020-07-29T00:00
Forums Director Kevin Schaefer talks about taking on extra responsibilities while his Mom recovers from surgery.
Welcome to all of the new forum members. This week on the forums some of t...
Iowa Adds SMA as a Pilot Program For Newborn Screening & DeAnn Runge Got a New Kitten from 2020-07-27T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the news that Iowa adds SMA as a pilot program for newborn screening.
With so much going on in the world DeAnn’s welcomed...
Spinraza Eases Fatigue In Adults With SMA But That Benefit Wanes from 2020-07-24T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses
how Spinraza eases fatigue in adults with SMA, but that benefit wanes.
Are you interested in learning more about spin...
Socially Distanced Visits & 31 Days of SMA from 2020-07-22T00:00
Forums Director Kevin Schaefer talks about socially distanced visits with friends and 31 Days of SMA. DeAnn Runge also talks about socially distant visits, reintroducing PCA’s and disability pride ...
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#62 - Interview With Shawn Stewart from 2020-07-21T00:00
In episode 62, host Kevin Schaefer talks with Shawn Stewart from southern California. Shawn has his own tax service business, and he has SMA Type 3. He discusses growing up with a disability, adult...
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SMN Protein Levels in Blood May Mark SMA Severity & Disability Pride Month from 2020-07-20T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses
how SMN protein levels in blood, may mark SMA severity and help
guide treatment. For SMA News Today forums moderator DeAnn...
How New Glia Cell Markers May Provide Insight Into Neuromuscular Diseases, Including SMA and ALS from 2020-07-17T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how new Glia cell markers may provide insight into neuromuscular diseases, including SMA and ALS.
Are you interested in l...
Embracing Disability in Pride Month, Tips to Beat The Summer Heat & Travel and Equipment Rental from 2020-07-15T00:00
Forums Director Kevin Schaefer talks about embracing Disability Pride Month.
Summer is well under way and ways to beat the summer heat is a topic of discussion on the SMA forums. Travel an...
The Significant Limits to Treatment Seen For a Spinal Muscular Atrophy, Type 0, Baby from 2020-07-13T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the significant limits to treatment seen for a Spinal Muscular Atrophy, Type 0, baby.
Despite feeling discontent DeAnn sh...
Disparities Found in Parents And Children’s Perceptions of Spinal Muscular Atrophy from 2020-07-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses disparities found in parents and children’s perceptions of Spinal Muscular Atrophy.
Are you interested in learning more a...
How Having SMA Has Led To Many Positive Interactions With Strangers, Returning to School & Playlists from 2020-07-08T00:00
Forums Director Kevin Schaefer talks about how having SMA has led to many positive interactions with strangers.
On the forums this week returning to school is a topic of discussion as well...
#61 - Recapping the 2020 Cure SMA Virtual Conference from 2020-07-07T00:00
In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they p...
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Motor Function Improvement After One Year of Spinraza in Children With SMA Types 1-2 from 2020-07-06T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a motor function improvement after one year of Spinraza in children with SMA Types 1-2.
DeAnn Runge talks about the impor...
Systemic Treatment May Be More Effective For Spinal Muscular Atrophy from 2020-07-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a systemic treatment that may be more effective for Spinal Muscular Atrophy.
Are you interested in learning more about sp...
Switching Treatments, Summer Reading & Dealing With Health Issues On Top Of SMA from 2020-07-01T00:00
Forums Director Kevin Schaefer reflects on the life of his service dog Pandy, who recently passed away.
Recent topics of discussion on the forums include switching treatments, summer readi...
Risdiplam Continues To Show Promise For Treating SMA & Pulling Off a Surprise from 2020-06-29T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam continues to show promise for treating SMA.
Forums moderator DeAnn Runge shares her attempt to pull off a s...
31 Days of SMA & How 96% of Children Given Spinraza As Newborns Are Able To Walk According To Trial from 2020-06-26T00:00
Forums Director Kevin Schaefer talks about the upcoming initiative 31 Days of SMA, which is a collection of stories from people in the SMA community.
SMA News Today’s multimedia associate...
SMA My Way: A New Platform and Patient-Focused Community & What to Binge-Watch on Netflix from 2020-06-24T00:00
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column, which highlights the new patient initiative SMA My Way.
Forums moderator DeAnn Runge discusses her colleague’s con...
Interviews Probe How Unaffected Siblings Learn Genetic Implications of SMA from 2020-06-22T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses interviews that probe how unaffected siblings learn the genetic implications of Spinal Muscular Atrophy.
Forums moderator...
Too Little is Known About The Care Needs of Adults With SMA from 2020-06-19T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how too little is known about the care needs of adults with Spinal Muscular Atrophy.
Forums Director Kevin Schaefer talks...
The First Virtual Cure SMA Conference, Creating a Sanctuary, Scoliosis & Epic Wheelchair Stories from 2020-06-17T00:00
Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference.
This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scolio...
#60 - Interview With George Corbin from 2020-06-16T00:00
In episode 60, host Kevin Schaefer interviews George Corbin from Neptune, New Jersey. George is a graduate of Temple University, and he has SMA type 3. He currently works as a mortgage loan officer...
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How Heart Problems in SMA May Be Tied To Calcium Dysregulation from 2020-06-15T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how heart problems in SMA may be tied to calcium dysregulation.
Forums moderator DeAnn Runge shares her thoughts on why r...
SHINE Study Data Finds Spinraza Shows Sustained Efficacy Over Years of Use from 2020-06-12T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SHINE study data showing Spinraza has sustained efficacy.
In Brianna Albers’ latest column, she calls for more black ...
Cure SMA Conference Going Virtual in 2020 & Tips On Purchasing A New Electric Wheelchair from 2020-06-10T00:00
Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy.
With the Cure SMA Conference going virtual this year it’s led to many topics of conversation on t...
Feeding Issues Are Still Common Among SMA Type 1 Infants, Despite New Therapy Options from 2020-06-08T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how feeding issues still are common among SMA Type 1 infants, despite new therapy options.
As salons open up forums moder...
Real-World Study Shows That Spinraza Meets Most Therapeutic Expectations of Adult SMA Patients from 2020-06-05T00:00
SMA News Today’s, Senior Director of Multichannel Content, Michael Morale, discusses a real-world study that shows that Spinraza meets most therapeutic expectations of adult SMA patients.
...
#59 - A Conversation with Brianna Albers from 2020-06-04T00:00
In episode 59, host Kevin Schaefer talks with our very own columnist Brianna Albers. Brianna talks about quarantine, values-based living, and how she's keeping herself occupied during the COVID-19 ...
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Tips For Staying Active and Mentally Engaged This Summer & How The JACO Robotic Arm Opens Doors from 2020-06-03T00:00
Forums Director Kevin Schaefer shares some tips for staying active and mentally engaged this summer, while still remaining in self-isolation.
A hot topic on the forums is how the JACO Robo...
Study Finds Respiratory Weakness in SMA is Most Pronounced in Childhood & Treatment Options for SMA from 2020-06-01T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in childhood.
Since 2016 several treatment options for SMA ha...
SMA Treatment and Screening Programs “Essential” in The Covid-19 Pandemic from 2020-05-29T00:00
Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscular conditions like SMA.
SMA News Today’...
Risdiplam, Switching Treatments & Difficult Breathing While Wearing Masks from 2020-05-27T00:00
Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments.
Masks are a hot topic on the forums. With findi...
Study Addresses Dilemmas Regarding Newborn Screening and SMA Treatment from 2020-05-25T00:00
Despite not being able to shop in person, DeAnn Runge finds a way to replace her television that decided to quit working at the most inopportune time.
SMA News Today’s multimedia associate...
How a Family and Doctor “Partnership” That Led to a Baby’s Spinraza Treatment from 2020-05-22T00:00
Forums Director Kevin Schaefer reads the latest post from caregiver columnist Michael Casten.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a family and doctor “partne...
Fatigue Experienced Prior Spinraza Injection & Cure SMA COVID-19 Care Package from 2020-05-20T00:00
Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection.
DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COV...
#58 - How COVID-19 Affects Spinraza and Other Medical Appointments from 2020-05-19T00:00
In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting their Spinraza appointments and other medical procedures. Hosts Kevin Schaefer and Michael Morale, and foru...
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How Lung Ultrasound is a Reliable Option to Chest X-rays for Monitoring Children from 2020-05-18T00:00
Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challenges and concerns.
SMA News Today’s multi...
Study Suggests The Interplay of Motor Neurons and Glial Cells is At The Root of SMA from 2020-05-15T00:00
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?”
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a...
Differences Between Risdiplam and SRK-015, Dealing With Anxiety & Taking Things For Granted from 2020-05-13T00:00
In the forums Michael Morale’s latest video, which points out the differences between risdiplam and SRK-015 as potential SMA treatments, has been a topic of conversation.
Brianna Albers' ...
How Risdiplam Defies SMA “Natural History” in Type 1 Infants, According to FIREFISH Study Data from 2020-05-11T00:00
Forums moderator DeAnn Runge shares her experience of getting Spinraza amidst the COVID pandemic.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam defies SM...
How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery from 2020-05-08T00:00
Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how growt...
How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options & Online Therapy from 2020-05-06T00:00
Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising optio...
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#57 - Interview with Heather Kerstetter from 2020-05-05T00:00
In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, ...
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How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA from 2020-05-04T00:00
Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward.
SMA News Today’s multimedia associate, Price...
Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2 from 2020-05-01T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2.
SMA News Today’s Senior Director of Mu...
Telemedicine, Therapy Platforms, Alternative Exercise Routines & Hospital Preparedness Folders from 2020-04-29T00:00
Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift.
Also, on our forums over the last week we’...
Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial from 2020-04-27T00:00
While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, d...
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First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza from 2020-04-24T00:00
Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift.
SMA News Today’s multimedia associate, Price Wooldridge, discuss...
Playing Phone Games and Nintendo Switch & Home Exercise Routines and Robotic Assistance Devices from 2020-04-22T00:00
Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability.
Also, there have been some recent dis...
#56 - SMA Treatments Overview and “Crip Camp” Discussion from 2020-04-21T00:00
In episode 56, hosts Kevin Schaefer and Michael Morale provide an overview of the different SMA treatments, and discuss recent news about the experimental therapy risdiplam.
Then in part ...
How Adult Patients with SMA Benefit From Spinraza Treatments from 2020-04-20T00:00
To increase her independence, forums moderator DeAnn Runge is debating if she should pursue a service dog, a JACO Robotic Arm or both. Each option presents with pros and cons.
SMA News Tod...
Ideas for Staying Fit and Healthy During Isolation & Approval of Zolgensma for Treating SMA in Japan from 2020-04-17T00:00
Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Z...
Accessible Toys, Having Fun With Subscription Boxes & Kevin Schaefer's Obsession With Action Figures from 2020-04-15T00:00
The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversatio...
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Odd Jobs, Spring Cleaning & French Study Finds Improvements in Palliative Care for SMA Type 1 Babies from 2020-04-13T00:00
Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which fin...
FDA Shifts Risdiplam Decision to August to Include Data on Older Patients from 2020-04-10T00:00
Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability.
SMA News Today’s multimedia associate, Price Wooldr...
Managing Spinraza Treatments, Caregivers, Outside Deliveries and More During COVID-19 from 2020-04-08T00:00
COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more.
<...
#55 - Interview With Victor Guerra from 2020-04-07T00:00
In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and...
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How Scoliosis Surgery in SMA Children is Linked to Permanent Motor Skill Loss from 2020-04-06T00:00
Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments.
SMA News Today’s multimedia associate...
Discussing Markers of Inflammation Essential for AAV Gene Therapy Use & Thoughts About “Crip Camp" from 2020-04-03T00:00
Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities.
SMA News Today’s...
The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times from 2020-04-01T00:00
With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times.
Also, forums Director Kevin Schaefer refle...
Global Rare Disease Group’s Goal to Have 1,000 New Therapies by 2027 & Benefits of a Service Dog from 2020-03-30T00:00
Forums moderator DeAnn Runge talks about how having a service dog has enhanced her life.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a global rare disease group’s go...
Book, Movie and Spotify Recommendations & Study Recommends a Lower Radiation Dose for Spinraza Scans from 2020-03-27T00:00
Forums Director Kevin Schaefer shares some book, movie, and Spotify recommendations for people who are on quarantine.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a s...
Alternative Solutions to Physical Therapy During the COVID-19 Pandemic from 2020-03-25T00:00
Forums Director Kevin Schaefer talks about alternative solutions to physical therapy. As a result of the COVID-19 pandemic, he has to refrain from going to his appointments for now.
Also, ...
New Test Screens 420 Genes for Markers of SMA & A Message to Friends, Family About COVID-19 from 2020-03-23T00:00
Forums moderator DeAnn Runge shares her message to friends and family in regards to COVID-19 and their lives being turned upside down.
SMA News Today’s multimedia associate, Price Wooldrid...
Tips For Self-Isolation During the Coronavirus & SYT13 Gene Can Prolong Life in Mice With SMA from 2020-03-20T00:00
Forums Director Kevin Schaefer shares some of his tips for self-isolation during the Coronavirus (COVID-19) outbreak.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how...
Coronavirus (COVID-19): Precautions, Protecting Yourself and Staying Productive During Lockdown from 2020-03-18T00:00
One of the main topics of conversation over on the forums is COVID-19. Posted are links to resources and tips on staying productive during lockdown. DeAnn also discusses where to find the latest ...
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#54 - Roundtable About Corona Virus from 2020-03-17T00:00
In episode 54, Michael and I discuss the global outbreak of Coronavirus (COVID-19). We share our tips for how others in the SMA community can best protect themselves, as well as their caregivers. P...
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Risdiplam Under FDA Review & How the Lack of SMA Protein May Also Directly Contribute to SMA from 2020-03-16T00:00
Anticipation is growing as Roche/Genentech's treatment risdiplam, the first oral medication to treat SMA, is under FDA review.
SMA News Today’s multimedia associate, Price Wooldridge, disc...
Importance of Physical Therapy & Institute for Gene Therapies to Modernize Reimbursement Framework from 2020-03-13T00:00
SMA News Today’s Senior Director of Multichannel Content, Michael Morale, discusses the importance of physical therapy, and how physical therapy can not only help avoid problems, but also correct s...
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COVID19, Spinraza, Bloating, SPC’s, Being Spontaneous & Transferring Out Of Wheelchair To Take a Nap from 2020-03-11T00:00
In the forums a topic of discussion has been the thing that’s on everyone’s mind, the Novel Coronavirus, also known as COVID19. Spinraza has also been discussed. Other topics include bloating, SP...
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Being Spontaneous With SMA & How Body Composition May be a Biomarker of Motor Function in SMA from 2020-03-09T00:00
Spontaneity can be difficult when you have SMA. Sometimes it even takes planning. Forums moderator DeAnn Runge shares how she does it and is looking for advice on how to be even more spontaneous....
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Maintaining Long-Distance Friendships & MDA Executive’s Discussion of Gene Therapies from 2020-03-06T00:00
Forums Director Kevin Schaefer talks about maintaining long-distance friendships, particularly with people in the SMA community.
SMA News Today’s multimedia associate, Price Wooldridge, de...
Celebrating Rare Disease Day 2020 with #WhatMakesMeRareSMA & How Music Plays a Big Part in Life from 2020-03-04T00:00
February 29th was recognized as Rare Disease Day across the world. SMA News Today columnists shared what this day meant to them. A social media campaign was also successful in bringing awareness ...
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#53 - Interview with Alyssa Silva from 2020-03-03T00:00
In episode 53, host Kevin Schaefer interviews our very own Alyssa Silva. Alyssa is from Cumberland, Rhode Island, and she is a columnist and forums moderator here at SMA News Today. She’s also the ...
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Public Interactions with People With Disabilities & Muscular Dystrophy Association Helping Others from 2020-03-02T00:00
When it comes to public interactions with people who have disabilities there are no set rules. As someone who has a disability, DeAnn shares her thoughts on this topic.
Also, listen to SM...
Risdiplam Success in Treating SMA Type 1 Babies in FIREFISH Study & Kevin's Spinraza Injection from 2020-02-28T00:00
Forums Director Kevin Schaefer talks about his most recent Spinraza injection and SMA News Today’s multimedia associate, Price Wooldridge, discusses the Risdiplam success in treating SMA Type 1 bab...
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Talking About Rare Disease Day & Accessible Parking, Sleepovers with SMA and Product Reviews from 2020-02-26T00:00
Forums Director Kevin Schaefer talks about the upcoming Rare Disease Day, and what it means to him.
Also, DeAnn Runge shares the latest activity going on in the forums. Among the topics b...
The Discovery of a Potential New SMA Genetic Modifier & Having a Great Deal of Strength from 2020-02-24T00:00
Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook.
...
How a CSF Protein Profile May Help Predict Spinraza Responses in Late-Onset SMA Patients from 2020-02-21T00:00
Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums.
Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF prot...
Kevin Schaefer Reads His Week’s Motivational Post & Katie Napiwocki's Comeback as a Columnist from 2020-02-19T00:00
Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columni...
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#52 - Getting to Know Luisa Palazola and Rare Disease Day 2020 from 2020-02-18T00:00
In episode 52, host Kevin Schaefer talks with Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibr...
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How Magnetic Rods May Help Scoliosis in Children with SMA & Living With Caution, Not Fear from 2020-02-17T00:00
Finding the balance between living cautiously and fearfully can be challenging. Forums moderator DeAnn Runge shares how she navigates that delicate balance.
Also, SMA News Today’s multime...
Early Access Program From Roche for SMA Therapy Risdiplam in Europe from 2020-02-14T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses an early access program from Roche for SMA therapy Risdiplam in Europe and forums Director Kevin Schaefer talks about forming frie...
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Accessible Travel, Becoming Friends With Your Caregivers and The Importance of Exercise With SMA from 2020-02-12T00:00
Some recent topics being discussed on the forums include accessible travel and becoming friends with your caregivers. Also, Dose of DeAnn has a new episode where she collaborates with a community m...
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New Treatment Algorithm For SMA Infants Via Vital Newborn Screening & Going To The Bathroom from 2020-02-10T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new treatment algorithm for SMA infants diagnosed via vital newborn screening. Also, for those with mobility issues one of the m...
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ZPR1 Protein May Be New PotentialTherapeutic Target For SMA & NBC's Pilot Featuring Kid With SMA from 2020-02-07T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the ZPR1 protein may be a new potential therapeutic target for SMA. Also, Forums Director Kevin Schaefer talks about an NBC pi...
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Embracing The Power of Your Voice & Struggling As a Family from 2020-02-05T00:00
Forums Director Kevin Schaefer talks about embracing the power of his voice in his latest column. Also, every family goes through their share of triumphs and tribulations. In Michael Casten’s lates...
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#51 - Interview with Ryan Manriquez and Nora Zade from 2020-02-04T00:00
In episode 51, I talked with Ryan Manriquez and Nora Zade from Sacramento, California. Ryan is a college student with SMA Type 2, and he and Nora have been dating for several months. Both are sopho...
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100 Free Zolgensma Treatments Worldwide in 2020 & Unplugging the iPad, Waste of Time from 2020-02-03T00:00
SMA News Today’s multimedia associate, Price Wooldridge, discusses how up to 100 free Zolgensma treatments are going to go out worldwide in 2020 under an access program. Also, one thing DeAnn Runge...
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Adults With SMA Tend To Report Low Prevalence of Non-Motor Symptoms & Reading From the SMA Forums from 2020-01-31T00:00
We discuss a study that finds adults with SMA, tend to report low prevalence of non-motor symptoms & Forums Director Kevin Schaefer reads from a Monday Motivation post in the SMA News Today Forums....
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Managing Stomach Issues As SMA Patient & Great Conversation in the SMA News Today Forums from 2020-01-29T00:00
Forums Director Kevin Schaefer talks about trying to manage stomach
issues as an individual with SMA & as usual there are great conversations going on in the SMA News Today forums, says DeAnn R...
Regular CSF Exams Are Urged Following Spinraza Treatments & Smart Home Devices from 2020-01-27T00:00
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home de...
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HHS Secretary's Efforts To Cure Rare Diseases & Taking Advantage of New Opportunities from 2020-01-24T00:00
We discuss the HHS Secretary, Alex Azar, touts the White House efforts to cure rare diseases & Forums Director Kevin Schaefer talks about taking advantage of new opportunities when you have SMA.
Being Rare and Resilient & No Topic Is Off Limits on The SMA News Today's Forums from 2020-01-22T00:00
Go to our forums: http://bit.ly/forumsflashbriefings
Forums Director Kevin Schaefer recounts the story of his adventures in
Philadelphia, and talks about what it means to be rare and r...
#50 - Roundtable Discussion - January 2020 from 2020-01-21T00:00
In episode 50, hosts Kevin Schaefer and Michael Morale discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regardi...
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Spinraza Stabilizes or Improves Motor Function in Older SMA Patients & The Reality of Aging from 2020-01-20T00:00
We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic kille...
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Multidisciplinary Approach Improves Spinraza Dosing Process in SMA Patients & Parenting and SMA from 2020-01-17T00:00
We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnist...
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Importance of Media Representation for People With Disabilities & Conversations in the SMA Forums from 2020-01-15T00:00
Forums Director Kevin Schaefer talks about the importance of media
representation for people with disabilities, and calls for more of it in 2020. Also, great conversations are going on in the f...
Targeted Genetic Screening Helps Diagnosing Patients With SMA-Like Symptoms & Pranking With SMA from 2020-01-13T00:00
We discuss how targeted genetic screening may be useful in diagnosing patients with SMA-like symptoms. Also, a harmless prank can be fun, but it’s not always easy when you have SMA. With the help o...
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Early Trial Data Shows SRK-015 Increases Myostatin Growth Factor Levels in SMA Patients from 2020-01-10T00:00
We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest c...
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Volunteering As A Reward & Humorous Interactions With People from 2020-01-08T00:00
In her most recent column, I Don’t Need to Win to Be a Winner: Volunteering Is Its Own Reward, Halsey explains how her volunteer efforts have been recognized. Halsey not only works with a great gro...
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#49 - Interview With Ashley Fox from 2020-01-07T00:00
In episode 49, host Kevin Schaefer interviews Ashley Fox from Southern
California. Ashley is currently studying psychology at a community college, and she has SMA type 2. She talks about growin...
Asuragen States New Screening Kit Analyzes SMN1 and SMN2 Genes in the Lab & Being Grateful from 2020-01-06T00:00
We discuss how Asuragen is stating that a new screening kit, quickly and thoroughly analyzes SMN1 and SMN2 genes in the lab. & With all the variables that can come into play getting her Spinraza in...
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Risdiplam Improves Motor Function for SMA types 2 and 3 Patients & New Year's Resolutions from 2020-01-03T00:00
We discuss how interim phase 2/3 data shows that risdiplam improves motor function in people with SMA types 2 and 3 & setting new year’s resolutions when you have SMA by Forums Director Kevin Schae...
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AveXis Unaware of the Cause of Inflammation that Led to the STRONG Trial Hold & 2019 Highlights from 2019-12-20T00:00
We discuss how AveXis is unaware of the cause of inflammation, that led to the STRONG trial hold of AVXS-101. Forums Director Kevin Schaefer shares some of his highlights from this year.
A...
Kevin's JACO robotic arm & Pondering Possibilities of the Future from 2019-12-18T00:00
Forums Director Kevin Schaefer recounts the story of acquiring his JACO robotic arm in his latest column & DeAnn Runge talks about Kala Godin's latest column, Pondering the Possibilities of the Fut...
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#48 - Roundtable Discussion December 2019 from 2019-12-17T00:00
In episode 48, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy risdiplam. We also talk with our very own DeAnn Runge. DeAnn disc...
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FDA Grants Priority Review For Risdiplam & Going To Concerts from 2019-12-16T00:00
We discuss the FDA granting priority review for risdiplam, which is a potential oral therapy for all SMA types. & How do you guys manage to do fun things that require a bit of travel? After hearing...
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BillionToOne's Prenatal Blood Test Now Available in 4 Countries in Europe & Being Proactive With SMA from 2019-12-13T00:00
We discuss how BillionToOne announced that prenatal blood test for SMA are now available in 4 countries in Europe and Forums Director Kevin Schaefer talks about being proactive and maintaining an i...
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Movies That Teach You How To Live With SMA & Forums Recap from 2019-12-11T00:00
Forums Director Kevin Schaefer reflects on his love for movies, and
especially the films that taught him lessons about living with SMA. Also, on the forums, www.smanewstoday.com/forums, there’s...
Exercise Helps Increasing Functional SMN Protein & Being Sick During Holidays from 2019-12-09T00:00
We discuss how researchers are stating how exercise can help increase functional SMN protein, and can supplement SMA treatments.
Being sick more holidays than being healthy have nurtured some r...
MRI Fiber Tracking May Be Potential SMA Biomarker for Response to Therapy & Thoughs On Risdiplam from 2019-12-06T00:00
We discuss a study that suggests how MRI fiber tracking may be a potential biomarker of SMA course and response to therapy. Forums Director Kevin Schaefer shares his thoughts on the experimental th...
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#10yearchallenge & Risdiplam Getting Fast Tracked For Approval from 2019-12-04T00:00
Forums Director Kevin Schaefer reflects on the past decade in his latest
column. Although the forum moderators took a short break from posting over the Thanksgiving holiday, there are several g...
#47 - Interview With James Ian from 2019-12-03T00:00
In episode 47, host Kevin Schaefer talks with James Ian from Los Angeles, California. James is a singer, songwriter, and actor, and he has SMA Type 3. Kevin and James talk about music, living with ...
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MRI Scans of Facial Nerves Can Help Diagnose SMA & Pets Teach Responsibility from 2019-12-02T00:00
We discuss how a study of MRI scans of facial nerves, can help diagnose spinal and bulbar muscular atrophy & Along with being a friend, pets teach responsibility. As long as they get TLC, they don’...
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New Potential SMA Therapeutic Target Found In Muscle Cells & Expressing Gratitude from 2019-11-29T00:00
We discuss how a mouse study suggests that a new potential SMA therapeutic target was found in muscle cells and Forums Director Kevin Schaefer talks about expressing gratitude; he also invites list...
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How Rare Disease Family Goes Beyond the SMA Community & Personal Stories About SMA from 2019-11-27T00:00
Forums Director Kevin Schaefer talks about how his rare disease family goes beyond the SMA community. Also, here at SMA News Today we have top notch columnists who share personal stories about thei...
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Study Suggests SMA Patients May Benefit From A Low-Fat Diet & Dealing With Disappointment from 2019-11-25T00:00
We discuss how a mouse study suggests that SMA patients may benefit from a low-fat diet. DeAnns' perspective: despite having a positive attitude, dealing with disappointment is inevitable. Although...
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SMN Protein Study Emphasizes Importance of Early SMA Treatment In Newborn Screening from 2019-11-22T00:00
We discuss how an SMN protein study in fetuses and children, emphasize the importance of early SMA treatment in newborn screening.
Are you interested in learning more about the latest trea...
The Importance of Rejuvenation for People With SMA & The SMA Forums Highlights from 2019-11-20T00:00
Forums Director Kevin Schaefer talks about the importance of rejuvenation for people with SMA. A lot of great conversations are going on in the forums: DeAnn Runge outlines the latest and invites e...
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#46 Roundtable Discussion - Discussion for November 2019 from 2019-11-19T00:00
In episode 46, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy Risdiplam. We also talk about AveXis’ decision to put its STRONG ...
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Study Suggests Spinraza Motor And Lung Functions Is SMA Type 3 Adults & Multitude Of Caregivers from 2019-11-18T00:00
We discuss a German study that suggests how Spinraza improved or stabilized motor and lung functions in SMA type 3 adults. Having a multitude of nurses and caregivers coming in and out of your life...
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Zolgensma Produces Promising Results In Young Children With Type II SMA & Life Progression from 2019-11-15T00:00
We discuss early trial data that shows how Zolgensma produces promising results in young children with type II SMA. Forums Director Kevin Schaefer reads an excerpt from Kala Godin’s latest column,<...
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Having a High Quality of Life With SMA & Five Servings of Strength by Michael Casten from 2019-11-13T00:00
Forums Director Kevin Schaefer talks about having a high quality of life while living with SMA.
DeAnn Runge's Segment: In his column, Five Servings of Strength, Michael Casten shares how his fa...
Scholar Rock’s Early Data Supports the Development of SRK-015 For SMA Types 2 and 3 from 2019-11-11T00:00
Forums moderator DeAnn Runge shares how stressful the scheduling process for Spinraza is for her. With so many aspects to consider it’s increasingly becoming a pain. Even more so than the injection...
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Risdiplam Continues to Show Survival and Motor Function Improvements from 2019-11-08T00:00
Forums Director Kevin Schaefer recaps some of our recent columns. We discuss how risdiplam continues to show survival and motor function improvements, according to trial results.
Are you inter...
New Forums Moderator and Thoughts On Existing and Emerging Treatments for SMA from 2019-11-06T00:00
A new moderator is joining the SMA News Today forums. Alyssa Silva is a current columnist and will also be moderating the forums along with her co-moderators to give a unique perspective on a varie...
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#45 - Interview With Jim And Becky Berry from 2019-11-05T00:00
In episode 45, host Kevin Schaefer talks with Jim and Becky Berry from Myrtle Beach, South Carolina. Jim and Becky share their experiences as parents of two sons with SMA, and they talk about the l...
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FDA Placed A Partial Hold On STRONG Trial Of AVXS-101 & Binge Watch TV Series from 2019-11-04T00:00
We discuss how the FDA placed a partial hold on the STRONG trial of AVXS-101, citing a concern that was seen in an animal study. This time of year forums moderator DeAnn Runge tends to Binge watch ...
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SMA STAT Genetic Test Is Enabling Earlier Diagnosis & Employment and SMA from 2019-11-01T00:00
We discuss how the SMA STAT genetic test, that’s offered free in the US, is enabling earlier diagnosis and Forums Director Kevin Schaefer reads from a forum topic about employment and SMA.
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Embracing The Imaginative Spirit of Halloween & SMA News Today Forums from 2019-10-30T00:00
Forums Director Kevin Schaefer talks about embracing the imaginative spirit of Halloween. Forums moderator DeAnn Runge shares what’s been going on in the forums over the past week. Topics include h...
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Skye, The First Baby Treated With Zolgensma, Is Getting Stronger & Embracing Halloween from 2019-10-28T00:00
We discuss how Skye, the first baby in Connecticut that was treated with Zolgensma, is getting healthier and stronger & Although Halloween was never her favorite holiday, forums moderator DeAnn Run...
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Oklahoma Ranks The Lowest On Programs That Are Key To Rare Diseases & Recent Columns from 2019-10-25T00:00
We discuss how Oklahoma ranks the lowest on programs that are key to rare diseases on NORDs 2019 state report card and Forums Director Kevin Schaefer talks about some of the recent columns on our m...
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Meeting Nerd Icons And Getting Started On Writing & Update On Forums Discussions from 2019-10-23T00:00
Forums Director Kevin Schaefer talks about meeting one of his nerd icons, and how her writing inspired his own & forums moderator DeAnn Runge provides an update on recent forum activity. She welcom...
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Rare Disease Groups Seeking Public Support To Renew Newborn Screening Act & Winter Hibernation from 2019-10-21T00:00
We discuss how rare disease groups are seeking public support to renew Newborn Screening Act in Senate & As winter approaches DeAnn talks about how, much like her plants, she can’t tolerate the col...
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Baby Girl's Family Brought From The UK to Ohio For Zolgensma Treatment & Maid of Honor from 2019-10-18T00:00
We discuss how small differences that marks SMA type 2, brought a baby girl’s family from the UK to Ohio for her Zolgensma treatment & Forums Director Kevin Schaefer reads from Alyssa Silva’s lates...
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Overview Of The SMA Forums And Recent Discussions & Coming-Of-Age Stories And Living With SMA from 2019-10-16T00:00
Forums moderator DeAnn Runge gives us an overview of the forums and updates us on recent discussions. If you haven’t already checked out the forums she encourages you to head on over and introduce ...
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#44 - Roundtable Discussion - Discussion for October 2019 from 2019-10-15T00:00
Hosts Kevin Schaefer and Michael Morale discuss the latest news regarding SMA therapies Spinraza and Risdiplam, as well as some of our recent columns. Listen here, and share your thoughts in the SM...
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Teen With Epilepsy Described As Rare Case of SMA & Alternative Options For Seating from 2019-10-14T00:00
We discuss how clinicians described a rare case of SMA associated with a teen who had epilepsy. Although alternative options for seating look appealing, forums moderator DeAnn Runge explains why th...
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Additional Space For Zolgensma Production With AveXis Catalent Partnership & Trending Topics from 2019-10-11T00:00
We discuss how additional space for Zolgensma production is the goal of AveXis Catalent partnership and Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today ...
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Problems With Metabolising Fat Molecules Are Worrisome In SMA Children & Being Inspirational from 2019-10-09T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that problems with metabolising fat molecules are evident and worrisome in SMA children and Forums D...
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Risdiplam Is Raising SMN Levels In Older Patients In Durable Ways & Dealing With Disappointment from 2019-10-07T00:00
We discuss early trial data showing how risdiplam is raising SMN levels in older patients in ways that seem durable & Despite having appositive attitude, dealing with disappointment is inevitable. ...
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Adding Reldesemtiv to Spinraza Improved Muscle Function In An SMA Mouse Model & Finding Humor from 2019-10-04T00:00
We discuss how adding Reldesemtiv to Spinraza or the investigational SMN-C1 improved muscle function in an SMA mouse model.
Community Development Manager Kevin Schaefer reads an excerpt from Al...
Prenatal Blood Test For SMA Is Now Available & "Rolling Through The Seasons" from 2019-10-02T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how a prenatal blood test for SMA and other single gene diseases is now available. Community Development Manager Kevin S...
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#43 - Interview With Jeff Olander from 2019-10-01T00:00
In episode 43, host Kevin Schaefer interviews Jeff Olander from Raleigh, North Carolina. Jeff is a PhD student at UNC-Chapel Hill, studying physics. He talks in this interview about his education, ...
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Macedonian Gaucher Activist For Rare Disease Patients & Getting Ready For The Cold from 2019-09-30T00:00
We discuss a Macedonian Gaucher activist, whose publicizing the plight of rare disease patients. Although fall and winter are her least favorite seasons, DeAnn finds being prepared can help the tra...
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European Spinraza Label Updated to Reflect Long-Term Benefits & Trending Topics from 2019-09-27T00:00
We discuss how the European Spinraza label was updated to reflect long-term benefits in broad ranges of SMA patients and Community Development Manager Kevin Schaefer talks about some of the trendin...
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High Chance Of Scoliosis Surgery in Types 1C and 2 & Superheroes With Disabilities from 2019-09-25T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a Dutch study that states there is a high probability of scoliosis surgery found for SMA types 1C, and 2. Community Deve...
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Spinraza Gives Babies With Type 1 SMA Hope For a Healthy Life in North Macedonia from 2019-09-23T00:00
We discuss how Spinraza gives babies with type 1 SMA in North Macedonia hope for a healthy life. Also, SMA News Today’s forums moderator, DeAnn Runge, shares how service dogs were introduced into h...
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Phase 2 Trial Shows Presymptomatic Spinraza Treatment to SMA Children Reaching Milestones from 2019-09-20T00:00
Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. We discuss how a phase 2 trial shows presymptomatic Spinraza treatment leads to SM...
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The World’s First Alport Stamp is a Macedonian Mom’s Latest Win for Rare Disease Patients from 2019-09-18T00:00
Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how t...
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#42 - Interview With Kyle Harris from 2019-09-17T00:00
In episode 42, host Kevin Schaefer talks with Kyle Harris from San Diego, California. Kyle talks about growing up with SMA Type 3, college, and accessibility in the modern world.
Are you i...
RNA Therapy Delivered by Viral Vector May Hold Potential to Treat SMA from 2019-09-16T00:00
We discuss how an RNA therapy that’s delivered by a viral vector may hold potential to treat SMA. Also, SMA News Today’s forums moderator, DeAnn Runge discusses how airlines do not allow wheelchair...
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Why Screening Tests For Zolgernsma’s Use Are Necessary & Motivational Post from 2019-09-13T10:42:49
Community Development Manager Kevin Schaefer reads from a motivational post in the SMA News Today forums. We discuss why screening tests and other steps for Zolgensma’s use are necessary.
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SMA Candidate SRK-015 Shows Promise in Healthy Volunteers & More Independence from 2019-09-11T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses an ongoing trial that states how SMA candidate SRK-015 shows promise in healthy volunteers and Community Development Man...
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Study Says Children With SMA Are at Risk of Weak Bones And Fractures & More Independence from 2019-09-09T00:00
We discuss a study that suggests children with SMA are at risk of weak bones and fractures and Community Development Manager Kevin Schaefer talks about his journey toward more independence.
How AveXis’ OneGene Program Could Help Families Wanting Zolgensma & Trending Topics from 2019-09-06T00:00
We discuss how AveXis’ OneGene program could smooth the path for families wanting Zolgensma and Community Development Manager Kevin Schaefer talks about some trending discussions
in the SMA New...
Future Work Into Zolgensma, Gene Therapy And Other SMA Treatments & Physical Books from 2019-09-04T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses likely future work into Zolgensma, gene therapies and other SMA treatments. Community Development Manager Kevin Schaefer...
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#41 - Roundtable Discussion - Discussion for September 2019 from 2019-09-03T00:00
Hosts Kevin Schaefer and Michael Morale discuss a recent webinar about AveXis’ gene therapy Zolgensma. Then in part two, they talk about SMA awareness month, and a couple of our recent columns.
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NORD Honors Industry In Patient Advocates At Rare Impact Awards Gala & Overprotective Parents from 2019-09-02T00:00
We discuss how NORD honors industry in patient advocates at rare impact awards gala and SMA News Today forums moderator DeAnn Runge shares her perspective on overprotective parents. A college frien...
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Anti-Epileptic Keppra Can Be A Candidate For SMA Treatment & Batcave For Personal Space from 2019-08-30T00:00
We discuss a study that suggests that suggests Anti-epileptic Keppra could be a candidate for treatment of SMA and Community Development Manager Kevin Schaefer reads his latest column about acquiri...
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Zolgensma’s Arrival Adds Urgency to SMA Newborn Screening Efforts & Natalie Russo And Her Brother from 2019-08-28T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma’s arrival adds urgency to SMA newborn screening efforts in the US and Community Development Manager Kevin ...
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Eurordis' Integrated Care Initiative For Rare Disease Patients & Cooperate With Physical Therapists from 2019-08-26T00:00
We discuss how Eurordis unveils an integrated care initiative for rare disease patients. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses working with physical the...
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RNA Molecule miR-23a May Have Therapeutic Role in SMA & From College Writing Course To A Career from 2019-08-23T00:00
We discuss a study that suggests that the small RNA molecule miR-23a, may have a therapeutic role in SMA. Also, Community Development Manager Kevin Schaefer reads from his latest column. In this po...
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Zolgensma’s Price And Its 'Cure One, Cure Many' Potential & Concerts Accessibility from 2019-08-21T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses an interview where researchers talk about Zolgensma’s price, and its cure one, cure many potential. Also, Community Dev...
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#40 - Interview With Kellie Cusack from 2019-08-20T12:21:40
In episode 40 of the SMA News Today Podcast, host Kevin Schaefer interviews Kellie Cusack. Kellie lives in New Jersey with her family, and is currently studying journalism at a community college. S...
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High Levels of Alpha-COP Proteins Seems To Ease SMA Severity in Mouse Models & Spinraza For 2 Years from 2019-08-19T00:00
We discuss how raising levels of Alpha-COP proteins, seems to ease SMA disease severity in mouse models. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about being on Spin...
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The "Rare Barometer” Is Helping Eurordis Shape EU Rare Disease Policies & SMA Community Diversity from 2019-08-16T00:00
We discuss “Rare Barometer”, which is a program that is helping Eurordis shape EU rare disease policies. Also, Community Development Manager Kevin Schaefer reads from his latest column about divers...
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Zolgensma For SMA Types 1, 2 And 3, More Options On The Way & Angela Titcombe from 2019-08-14T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how patients with SMA Types 1, 2, & 3, options for Zolgensma exist, and more may be on the way. Also, Community Develop...
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Ontario Patients Are Granted With Wider Access To Spinraza & Current Treatments, Brighter Futures from 2019-08-12T00:00
We discuss how SMA patients in Ontario are granted wider access to Spinraza. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how current treatments for SMA are gi...
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Family Says Zolgensma Saved All of Their Lives; Their Gene Therapy & Tyler Dukes from 2019-08-09T00:00
We discuss a family that states Zolgensma saved all of their lives, and they share their families journey through gene therapy, Also, Community Development Manager Kevin Schaefer reads from Tyler D...
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Zolgensma's Potential To Change The Whole Landscape of SMA & Melissa Milinovich's Story from 2019-08-07T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma has the potential to change the whole landscape of SMA. Also, Community Development Manager Kevin Schaefer...
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#39 - Interview With Jason Bertsch from 2019-08-06T00:00
In episode 39 of the SMA News Today Podcast, host Kevin Schaefer interviews Jason Bertsch from Greenfield, Indiana. Jason and his wife Kelly have two sons, and their youngest, Luke, has SMA Type 2....
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European SMA Advocates Question The EU’s Willingness to Reimburse Zolgensma & Independence from 2019-08-05T00:00
We discuss how European SMA advocates question the EU’s willingness to reimburse for Zolgensma. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about claiming your independ...
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Improved Survival And Key Motor Milestones Achieved With Risdiplam & Stress Management from 2019-08-02T00:00
We discuss how experts described improved survival and key motor milestones that were achieved with Risdiplam in SMA trials. Also, Community Development Manager Kevin Schaefer reads from a recent f...
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Results From Phase 2 Trial of Spinraza in Infants With SMA Support Efficacy And Safety & Sleeping from 2019-07-31T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how interim results from a phase 2 trial of Spinraza in infants with SMA support efficacy and safety. Also, Community De...
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Spinraza Is Showing Long-Term Benefits In All SMA Types & SMA Awareness Month from 2019-07-29T00:00
We discuss how Spinraza is showing long-term benefits in all SMA types. Also, Community Development Manager Kevin Schaefer talks about an initiative that SMA News Today is doing for SMA Awareness M...
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AveXis States Zolgensma Is Showing Strong Efficacy Across SMA Types & Coping With Bad Days from 2019-07-26T00:00
We discuss an interview with AveXis where they state that Zolgensma is showing strong efficacy across SMA types. Also, Community Development Manager Kevin Schaefer talks about coping with bad days ...
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Spinraza Continues to Demonstrate Safety and Improvements in SMA Patients & Tips For Giving Hugs from 2019-07-24T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Spinraza continues to demonstrate safety and provide improvements in SMA patients. Also, Community Development Manag...
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Will The National Institute For Health And Care Recommend Spinraza & Treating Each Day As A Blessing from 2019-07-22T00:00
We discuss whether or not the National Institute for Health and Care Excellence, (NICE), will recommend funding of Spinraza in England’s National Health System for all SMA patients. Also, SMA News ...
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Mom of a Child Who Lived Through Death With SMA and Through Life With Spinraza from 2019-07-19T00:00
We discuss an interview with a mom who says that her child lived through death with SMA and through life with Spinraza. Also, Community Development Manager Kevin Schaefer reads an excerpt from Bria...
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Zolgensma Helps Babies Treated Early But Older Patients May Also Benefit & 2019 Cure SMA from 2019-07-17T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma can help babies treated early, but older patients may also benefit. Also, Community Development Manager Ke...
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#38 - Roundtable Discussion - Discussion for July 2019 from 2019-07-16T00:00
In the latest episode of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss updates regarding SMA therapies Spinraza and Reldesemtiv. Also, Kevin and columnist Brianna Albe...
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NCATS Warns That Rare Diseases Constitute Public Health Issue & Going With The Flow from 2019-07-15T00:00
We discuss how the National Center For Advancing Translational Studies, (NCATS), warns that rare diseases constitute a public health issue. Also, SMA News Today forums moderator DeAnn Runge shares ...
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Study Suggests Spinraza Is Safe And Effective In Adults With SMA & Negative Experiences With Flying from 2019-07-12T00:00
We discuss a recent study that suggests that Spinraza is safe and effective in adults with SMA. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he recounts...
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Rare Case of Severe SMA in India & The Cure SMA Conference 2019 from 2019-07-10T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a rare case of severe SMA in India, that was partly evident by bone fractures at birth. Also, Community Development Mana...
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Risdiplam Is Showing Promise For Treating SMA Types 2 And 3 & Airline Companies And The FAA Updates from 2019-07-08T00:00
We discuss how Risdiplam is showing promise for treating SMA Types 2 and 3. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how airline companies, and the FAA, re...
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Risdiplam Improves Survival and Motor Functions in Infants With Type 1 SMA & The 9th Birthday from 2019-07-05T00:00
We discuss how Risdiplam improves survival and motor functions in infants with Type 1 SMA. Also, Columnist Michael Casten reflects on his daughter's ninth birthday, and how far she's come since her...
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SBMA Patients More Likely To Be Affected by Metabolic Disorders & Going To Faraway Coffee Shops from 2019-07-03T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that SBMA patients are more likely to be affected by metabolic disorders, including heart and liver ...
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#37 - Interview With Courtney Smith And Trevor Rogerson from 2019-07-02T00:00
In episode 37 of the SMA News Today Podcast, host Kevin Schaefer interviews Courtney Smith and her boyfriend Trevor Rogerson. They live in Seattle, Washington, and Courtney has SMA Type 2.
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Zolgensma Extends Survival in SMA Type 1 Patients Years After Dosing & How Will SMA Change from 2019-07-01T00:00
We discuss how Zolgensma continues to extend survival in SMA Type 1 patients several years after dosing. Also, SMA News Today forums moderator DeAnn Runge shares her perspective with regards to how...
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SMA Patients in Saskatchewan, Canada, Gained Wider Access to Spinraza & Recognizing Limitations from 2019-06-28T00:00
We discuss how SMA patients in Saskatchewan, Canada, have gained wider access to Spinraza. Also, Community Development Manager Kevin Schaefer talks about recognizing his limitations in his latest c...
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Spinraza Restores Motor Function in Children With Late Onset SMA & Kevan Chandler's Book from 2019-06-26T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a long-term trial that states how Spinraza was found to improve and restore motor function in children with late onset S...
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High Intensity Training Improves Fitness While Safe for SBMA Patients & Tips for Spinraza Treatments from 2019-06-24T00:00
We discuss a study that suggests how high intensity training improves fitness while being safe for patients with spinal bulbar muscular atrophy (SBMA). Also, SMA News Today’s Director of Multichann...
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Study Suggests Parents Need Supportive Care With Children Transitioning To Wheelchairs & Spinraza from 2019-06-21T00:00
We discuss a recent study that suggests how parents need supportive care as their children transition to wheelchairs. Also, Community Development Manager Kevin Schaefer talks about how Spinraza has...
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Spinraza Users Share Stories in Biogen's Webcast & Swimming Pool Lifts and Disability from 2019-06-19T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how some Spinraza users shared their stories in a Biogen webcast on how they went from a gut wrenching diagnosis to a wo...
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#36 - Roundtable Discussion - Discussion for June 2019 from 2019-06-18T00:00
In episode 36 of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss the FDA-approval of AveXis’ drug Zolgensma, and related news stories. We also look at some of our recent...
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Nonprofit Group Raising Awareness for Rare Diseases in India & SMA Teaching Patience from 2019-06-17T00:00
We discuss how a nonprofit group is working to raise rare disease awareness in India. Also, SMA News Today forums moderator DeAnn Runge shares her perspective regarding how living with SMA has taug...
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Study on the Underlying Cause of Motor Neuron Degeneration in SBMA & Getting Blood Drawn from 2019-06-14T00:00
We discuss a recent mouse study that explores the underlying cause of motor neuron degeneration in SBMA. Also, Community Development Manager Kevin Schaefer talks about finding the sweet spot, when ...
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PALS Is Offering Free Flights To Rare Diseases Patients & Head And Neck Control With Spinraza from 2019-06-12T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Patient Airlift Services (PALS) uplifts the spirits of rare disease patients by offering free flights. Also, Communi...
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Zolgensma Is Helping Babies To Breathe And Sit On Their Own & Keep Improving Your Life from 2019-06-10T00:00
We discuss how ZOLGENSMA is helping treated babies to breathe and sit on their own. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how his best friend inspired h...
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Changes in Bladder and the Colon May Underlie Gastrointestinal Issues in SMA & Medical Advancements from 2019-06-07T00:00
We discuss a recent study that suggests how certain changes in bladder and the colon, may underlie gastrointestinal issues in SMA. Also, Community Development Manager Kevin Schaefer reads from his ...
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Early Non-Neuromuscular Symptoms And The Lack of SMN Protein & Zolgensma Versus Spinraza from 2019-06-05T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a potential relationship that was found between early non-neuromuscular symptoms and the lack of SMN protein in SMA pati...
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#35 - Interview With Mike Blakey from 2019-06-04T00:00
In episode 35 of the SMA News Today Podcast, host Kevin Schaefer interviews Mike Blakey from Gainesville, Florida. Mike is a part-time CPA and attorney, and he has SMA Type 3."
Photo Contr...
ACTIVE Game Makes Monitoring Motor Function Fun & Life Expectancy from 2019-06-03T00:00
We discuss how a videogame by the name of ACTIVE, makes it more fun for patients to monitor their motor function. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective regarding...
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SMA Patients' Mothers Feel Better After Engaging In Social Activities & Home Alone With SMA from 2019-05-31T00:00
We discuss how mothers of SMA patients feel better after engaging in social and leisure activities. Also, Community Development Manager Kevin Schaefer reads from his latest column, about staying ho...
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Saudi Arabian Doctors Need To Be More Aware of Guidelines & Benefits of Eye Tracking Tech from 2019-05-29T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Saudi Arabian doctors need to be more aware of guidelines and new care for SMA. Also, Community Development Manager ...
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ZOLGENSMA Is The 2nd FDA Approved Treatment For SMA & Speech Generating Devices For Children from 2019-05-27T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, reads from an article published on the SMA News Today website regarding the official approval of ZOLGENSMA as the 2nd FDA approved...
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From Pediatric to Adult Care for SMA Patients & Getting an Accessible Hotel Room from 2019-05-24T00:00
We discuss how a study highlighted the difficulties of transitioning from pediatric to adult care for SMA patients. Also, Community Development Manager Kevin Schaefer reads from his latest column, ...
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Type 2 SMA Patients Are Doing Well With Zolgensma Regarding Motor Milestones & Home Alone With SMA from 2019-05-22T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how well Type 2 SMA patients are doing regarding motor milestones and safety concerns regarding taking Zolgensma. Also, ...
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#34 - Roundtable Discussion - Discussion for May 2019 from 2019-05-21T00:00
In episode 34 of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale talk about the latest SMA news and perspectives from May 2019. Topics include clinical trial updates from the 20...
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Protease Inhibitors Show Potential to Treat SMA by Raising SMN Levels & Physical and Inner Strength from 2019-05-20T00:00
We discuss how Protease Inhibitors show potential to treat SMA by raising SMN levels. Also, SMA News Today forums moderator DeAnn Runge shares her perspective regarding not only physical strength, ...
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Upper Survival Rate For Adults And Children With Neuromuscular Disorders & Being Kind from 2019-05-17T00:00
We discuss how the survival rate is up for adults and children with neuromuscular disorders. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how showing respect a...
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Study on How Leuprorelin Acetate Reduces Swallowing Dysfunctions in SBMA & Unique Interactions from 2019-05-15T11:33:56
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that finds how Leuprorelin Acetate may reduce swallowing dysfunctions in SBMA patients. Also, Community Developm...
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MDA Conference Brought Neuromuscular Experts Together & What To Ask About Zolgensma? from 2019-05-13T00:00
We discuss how the MDA conference brought neuromuscular disease experts together to share a new era in treatments. Also, Community Development Manager Kevin Schaefer talks about what questions adul...
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Better Screening Techniques Improved Advancements in SMA Treatments & Knowing Your Limitations from 2019-05-10T00:00
We discuss how better screening techniques have improved advancements in SMA treatments. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective regarding knowing your limitations...
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Brexit Can Have Real Effects For UK Rare Disease Patients & Loving Physical Therapy from 2019-05-08T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Brexit could have real effects for UK rare disease patients. Also, Community Development Manager Kevin Schaefer read...
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#33 - Interview With John Scurto from 2019-05-06T00:00
In episode 33 of the SMA News Today Podcast, host Kevin Schaefer interviews John Scurto from Boca Raton, Florida. John is a senior at Florida Atlantic University, studying business management, and ...
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Valproic Acid Improves Gross Motor Function, Not Respiratory Function & New Zolgensma Forum from 2019-05-06T00:00
We discuss how Valproic Acid improves gross motor function, but not respiratory function in SMA patients. Also, Community Development Manager Kevin Schaefer introduces a forum dedicated to Zolgensm...
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Cure SMA And PPMD Join Prometheus Research in Data Partnership & The Right Aid For Your Kid from 2019-05-03T00:00
We discuss how Cure SMA and PPMD join Prometheus Research in a data collection partnership. Also, Community Development Manager Kevin Schaefer shares tips for parents about finding the right aid fo...
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Spinraza Could Help With Skin Lesions & Tips On Finding Aids For Children With SMA from 2019-05-01T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how skin lesions in an infant with SMA Type 1, were cured after their Spinraza treatment. Also, Community Development Ma...
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SMA Newborn Screening Expands With Mandatory Screening & Our Decisions Affect Those Around Us from 2019-04-29T00:00
We discuss how SMA newborn screening is expanding as more states enact mandatory screening. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how important it is to...
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Why SMA Patients Don’t Need Higher Radiation Doses in CT-Guided Spinraza Injections & New Column! from 2019-04-25T00:00
We discuss a study that explains why SMA patients don’t need higher radiation doses in CT-guided Spinraza injections. Also, Community Editor Kevin Schaefer introduces a new column by Katie Napiwock...
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How Moral Dilemmas Complicate Treatment of Rare Diseases & Making Big Occasions Inclusive from 2019-04-24T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how moral dilemmas complicate treatment of rare diseases. Also, Community Editor Kevin Schaefer reads from his latest co...
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New Endurance Test Can Measure Fatigue in Types 2, 3, & 4 SMA Patients & Accomplishing Goals from 2019-04-22T00:00
We discuss how a new endurance test can measure fatigue in types 2, 3, & 4 SMA patients. Also, SMA News Today forums moderator DeAnn Runge shares her perspective on accomplishing your goals while l...
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Britain Pushes To Make Spinraza Available & Travel and Socializing With SMA from 2019-04-19T00:00
We discuss how the British MP is pushing to make Spinraza available for SMA patients. Also, Community Editor Kevin Schaefer reads from his latest column, in which he describes how SMA has affected ...
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Phase 2 Trial Planned for SRK-015 After Positive Phase 1 & On-Land Versus Aquatic Therapy from 2019-04-17T00:00
We discuss how a phase 2 trial is planned for SRK-015 in SMA patients after positive phase 1 data was reported. Also, Community Editor Kevin Schaefer talks about trying on-land physical therapy, an...
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#32 - Roundtable Discussion - Discussion for April 2019 from 2019-04-17T00:00
In episode 32 of the SMA News Today Podcast, Community Editor Kevin Schaefer and Multichannel Content Director Michael Morale talk about the top news stories from April 2019. This episode covers ne...
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Spinraza and ZOLGENSMA Improve Lives of Kids With SMA & Accomplishing Your Goals from 2019-04-15T00:00
We discuss how Spinraza and ZOLGENSMA both dramatically improve the lives of kids with SMA. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective on accomplishing your goals whi...
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Calculating SMN1 Copies, Identifying SMA Carriers & Spinal Fusion Surgery Benefits from 2019-04-11T00:00
We discuss how scientists have created a new method to calculate the number of SMN1 copies and identify SMA carriers. Also, Community Editor Kevin Schaefer talks about his spinal fusion surgery in ...
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Parents Want Better Communications With Healthcare Staff & Absurd Humor from 2019-04-10T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how parents want better communications with health care staff regarding their children with SMA. Also, Community Editor ...
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#31 - Interview With Angela And Justin Titcombe from 2019-04-08T00:00
In episode 31 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Angela and Justin Titcombe from Houston, Texas. Angela is a schoolteacher who has SMA type 2, and she and Jus...
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WODC 2019 Will Receive 1200 Attendees & Physical Therapy Improves Recovery Efforts from 2019-04-08T00:00
We discuss how organizers expect 1,200 people to attend the Rare Disease Conference known as WODC 2019 in April. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses h...
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Spinraza for Most SMA Patients in China & Ben Mattlin's Book on Inter-abled Relationships from 2019-04-05T00:00
We discuss how China has approved Spinraza for most SMA patients. Also, Community Editor Kevin Schaefer reads from his review of a book about inter-abled relationships by Ben Mattlin. Mattlin is a ...
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FDA Revising Guidelines on Developing Treatments for Rare Diseases & “Dr. Phil's" Inter-Abled Couple from 2019-04-03T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the FDA is revising the draft guidelines on developing treatments for rare diseases. Also, Community Editor Kevin Sc...
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New Gene Therapy is Able to Repair Mutations Causing SMA & Coping With Getting Older from 2019-04-01T00:00
We discuss how a new gene therapy approach is able to repair mutations causing SMA, and other inherited diseases. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses ...
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NIH Rare Disease Day & Personal Aides at School as Preparation for Caregivers as an Adult from 2019-03-29T00:00
We discuss how the NIH Rare Disease Day highlights joint networks advancing array of research. Also, Community Editor Kevin Schaefer reads from his latest column, in which he talks about how having...
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Healthcare for Children With SMA Needs Improvement & Living With Permanent Feeding Tube from 2019-03-27T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how parents believe healthcare for children with SMA needs to be improved. Also, SMA News Today forums moderator DeAnn R...
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SMA Patients from Ireland and UK Demanding Reimbursement for Spinraza & Humor as Key from 2019-03-25T00:00
We discuss how SMA patients in Ireland and the UK are demanding reimbursement for the cost of Spinraza. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how humor ...
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#30 - Roundtable Discussion - Featured Articles from 2019-03-25T00:00
In episode 30 of the SMA News Today Podcast, Kevin Schaefer and Michael Morale discuss the latest news regarding Spinraza (nusinersen) and Zolgensma (AVXS-101). Both of these drugs are designed to ...
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Spinraza's Developers Disappointed With Canadian Agency & SMA as Part of Self Identity from 2019-03-22T00:00
We discuss how the developers of Spinraza are disappointed with a Canadian agency’s updated recommendation. Also, Community Editor Kevin Schaefer reads from his latest column, in which he talks abo...
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3D Cell Model Mimics SMA Motor Neurons & How to Sign Up SMA News Today Forums from 2019-03-20T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how a 3-D cell model mimics SMA motor neurons, and how this is a good platform for testing possible therapies. Also, Com...
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Vienna Will Host the RARE2019 Meeting & Michael's 8th Spinraza Injection from 2019-03-18T00:00
We discuss how Vienna is scheduled to host the RARE2019 meeting on rare diseases. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses the results of his 8th Spinraza ...
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Spinraza's Cost Effectiveness Exceeds Swedish Willingness to Pay Threshold & Being a Writer With SMA from 2019-03-15T00:00
We discuss how the cost effectiveness of Spinraza exceeds Swedish willingness to pay threshold. Also, Community Editor Kevin Schaefer reads from one of his forum posts, in which he shares advice ab...
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New Technique MUNIX May Capture Motor Neuron Loss and Muscle Status & Kevin's Roadtrip from 2019-03-13T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how a new technique called MUNIX may capture motor neuron loss and muscle status in SMA type 3 and 4 adults. Also, Commu...
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New Testing Method Called RULM & DeAnn's Journey With Spinraza from 2019-03-11T00:00
We discuss how a testing method known as RULM, can assess the arms’ function in a wider spectrum of SMA patients. Also, SMA News Today forums moderator DeAnn Runge shares her journey, while she goe...
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#29 Interview With Kelly Miller from 2019-03-11T00:00
In episode 29 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Kelly Miller. Kelly is a retired disability claims representative, and she has SMA type 2. She currently live...
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ArcherDX Enters Newborn Screening Market & Self-Care for Parents and Caregivers from 2019-03-08T00:00
We discuss how ArcherDX enters the newborn screening market with the acquisition of a company by the name of Baby Gene. Also, Community Editor Kevin Schaefer reads from a forum post about self-care...
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SMA and ALS are Linked Via Molecule Crucial to Protein Development & Experiences With PFTs from 2019-03-06T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how SMA and ALS are linked via a central hub molecule crucial to protein development. Also, Community Editor Kevin Schae...
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Clinical Compound Improves Outcomes in SMA Mouse Models & Michael Talks About His Spinraza Injection from 2019-03-04T00:00
We discuss how a new compound improves clinical outcomes in mouse models of SMA. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, shares his perspectives on his upcoming mai...
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A Sense of Well-Being & SMA Parents Skeptical About Spinraza from 2019-03-01T00:00
We discuss how a sense of well-being tied to ability, take part in life and engagement with SMA patients. Also, Community Editor Kevin Schaefer reads from a post in the SMA News Today forums. This ...
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Cure SMA Campaign Promotes Early Diagnosis and Treatment & Impact of Technology from 2019-02-27T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the Cure SMA campaign promotes early diagnosis and treatment. Also, Community Editor Kevin Schaefer reads from his l...
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#28 Roundtable Discussion - Going To College If You Have SMA from 2019-02-26T00:00
In episode 28 of the SMA News Today Podcast, Community Editor Kevin Schaefer and Multichannel Content Director Michael Morale talk about their college experiences. During this discussion, Kevin and...
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The Upcoming Rare Disease Day & Sympathy Versus Empathy from 2019-02-25T00:00
We discuss how patients, families and friends will take part in a variety of rare disease day events worldwide on February 28, 2019. Also, SMA News Today’s Director of Multichannel Content, Michael...
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New SMArtCARE Online SMA Registry & Having Long and Short-Term Goals for Yourself from 2019-02-22T00:00
We discuss how a new SMArtCARE online SMA registry will gather patient data. Also, Community Editor Kevin Schaefer reads from a topic in the SMA News Today forums, in which he talks about having lo...
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Risdiplam Granted With EMA’s PRIME Designation & Letting Children With SMA Have Big Dreams from 2019-02-20T00:00
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Risdiplam was granted the EMA’s PRIME designation for potential in SMA. Also, Community Editor Kevin Schaefer reads ...
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Pennsylvania Clinic for Amish and Mennonite Children With SMA & Scotland's New Rules for Spinraza from 2019-02-18T00:00
We discuss a rural Pennsylvania clinic that treats Amish and Mennonite children who have SMA. Also, SMA News Today’s Multichannel Content Director, Michael Morale, reads an article about how Scotla...
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New Screening Process May Speed SMN2 Splicing & Talking About Valentine's Day from 2019-02-15T00:00
We discuss how a new screening process may speed work on SMN2 splicing approaches to treat SMA. Also, Community Editor Kevin Schaefer reads from his latest column, in which he shares his perspectiv...
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FDA Revises Guidance Regarding Rare Diseases & Being Able to Sit Unassisted With Aquatic Therapy from 2019-02-13T00:00
Michael Morale discusses how the FDA is revising the draft guidance on developing treatments for rare diseases. Also, Kevin Schaefer discusses how he and his physical therapist worked on him sittin...
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Fatigue and Quality of Life in SMA Patients Not Related? & Not Letting SMA Define You as a Person from 2019-02-11T00:00
We discuss a study where perceived fatigue was not linked to physical factors regarding the quality of life in SMA patients. Also, SMA News Today’s Director of Multimedia, Michael Morale, talks abo...
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#27 Interview With Michele Erwin from 2019-02-11T00:00
In episode 27 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Michele Erwin, whose son Greyson has SMA. Michele is the founder of All Wheels Up, an organization dedicated ...
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FDA's Approval for the 6MWT as Reldesemtiv Program & Setting Goals While on Physical Therapy from 2019-02-08T00:00
We discuss the FDA’s approval for the 6MWT (6 Minute Walk Test) as a primary goal of potential Reldesemtiv program for SMA patients. Also, SMA News Today’s Community Editor, Kevin Schaefer, discuss...
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SMA Types 3 and 4 Linked to Atrophy in the Neck Area & Costs of Independence When You Have SMA from 2019-02-06T00:00
Michael Morale discusses how damage that marks SMA types 3 and 4 are linked to atrophy in the neck area of spinal cords. Also, Kevin Schaefer discusses a column that he wrote regarding the cost of ...
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New Website on Gene and Cell Therapies Education & Advantages of Physical Therapy While on Spinraza from 2019-02-04T00:00
We discuss a newly launched website regarding patient education programs on gene and cell therapies. Also, SMA News Today’s Multimedia Director, Michael Morale, was recently asked to be the guest s...
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Certain Protein Levels May Track Spinraza's Effectiveness & Training a New Caregiver from 2019-02-01T00:00
We discuss how certain protein levels may track effectiveness of Spinraza. Also, Kevin Schaefer reads his article that he wrote for the SMA News Today website regarding training a new caregiver whe...
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Rising Healthcare Costs Are Straining Budgets & Review of the Movie "The Upside" from 2019-01-30T00:00
Michael Morale discusses how rising healthcare costs are straining the budgets in the European Union. Also, Kevin Schaefer reads from his review of the movie "The Upside", and how it portrays disab...
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New Method To Evaluate Children's Nutritional Status & Pending Approval of Zolgensma from 2019-01-28T00:00
We discuss how scientists have developed a new method to evaluate nutritional status of children with SMA. Also, Michael Morale discusses the question that many individuals with SMA are trying to a...
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#26 Roundtable Discussion - The Process Of Hiring Caregivers from 2019-01-28T00:00
SMA News Today Community Editor Kevin Schaefer, and Forums & Miltimedia Director Michael Morale discuss tips on hiring a caregiver. Kevin has a caregiver that comes to his house a couple of times e...
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How Zolgensma Could Be More Cost-Effective Than Spinraza & How Much We've Changed in 10 Years from 2019-01-25T00:00
We discuss how ZOLGENSMA could be more cost-effective than Spinraza. Also, Kevin Schaefer discusses an article that he wrote for the SMA News Today website regarding how much each of us have change...
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Poland Is Reimbursing Spinraza's Costs & Having Your Own Space While Living With SMA from 2019-01-23T00:00
Michael Morale discusses the decision that was recently made where Poland agreed to reimburse the cost of Spinraza to treat SMA. Also, Kevin Schaefer discusses an article that he wrote for the SMA ...
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Spinal Cord's MRI As Non-Invasive Monitoring Technique & Adding SMA to Newborns Screening List from 2019-01-21T00:00
We discuss how high-resolution magnetic resonance imaging, (MRI), of the spinal cord may be a non-invasive way of monitoring SMA disease progression and responses to treatment. Also, Michael Morale...
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Permanent Treatment for SMA With Genetic Therapy & The New Forum: "Disability in Media" from 2019-01-18T00:00
We discuss a new genetic approach to restore the expression of the gene that causes spinal muscular atrophy (SMA) in patients’ cells, which holds promise to effectively and permanently treat SMA. A...
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SMA News & Perspectives - January 16, 2019 from 2019-01-16T00:00
SMA News & Perspectives - January 16, 2019 by SMA News Today
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SMA News & Perspectives - January 14, 2019 from 2019-01-14T00:00
SMA News & Perspectives - January 14, 2019 by SMA News Today
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SMA News & Perspectives - January 11, 2019 from 2019-01-10T00:00
SMA News & Perspectives - January 11, 2019 by SMA News Today
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SMA News & Perspectives - January 9, 2019 from 2019-01-09T00:00
SMA News & Perspectives - January 9, 2019 by SMA News Today
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#25 - Interview With Tyler Dukes from 2019-01-07T00:00
SMA News Today Community Editor Kevin Schaefer interviews Tyler Dukes. Tyler has SMA Type 2, and he shares his perspectives about growing up with SMA, and the hurdles he's faced throughout his life.
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SMA News & Perspectives - January 7, 2019 from 2019-01-07T00:00
SMA News & Perspectives - January 7, 2019 by SMA News Today
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SMA News & Perspectives - January 4, 2019 from 2019-01-04T00:00
SMA News & Perspectives - January 4, 2019 by SMA News Today
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SMA News & Perspectives - January 2, 2019 from 2019-01-01T00:00
SMA News & Perspectives - January 2, 2019 by SMA News Today
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#24 - Abby Quinn & Kristen from 2018-12-16T00:00
SMA News Today Community Editor Kevin Schaefer interviews Abby Quinn and Kristen Bathe -- childhood friends who run an inclusive fashion line for people with disabilities. Read all about them here:...
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SMA News & Perspectives - December 10, 2018 from 2018-12-10T00:00
SMA News & Perspectives - December 10, 2018 by SMA News Today
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#23 Roundtable Discussion - Importance Of Physical Therapy from 2018-12-07T15:11:55
SMA News Today Community Editor Kevin Schaefer and Forums and Multimedia Director Michael Morale discuss the advantages of taking physical therapy while on active treatment with Spinraza. Kevin dis...
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#22 SPECIAL EDITION - Zolgensma (AVXS - 101) Under Priority FDA Review from 2018-12-04T00:00
SMA News Today Forums & Multimedia Director Michael Morale discusses the breaking news Zolgensma (AVXS-101) Under Priority FDA Review as Possible Gene Therapy for SMA Type 1.
Read the ful...
#21 - Roundtable Discussion Of AVXS - 101 from 2018-11-26T00:00
SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale discuss AveXis' filing for FDA approval of experimental small therapy AVXS-101.
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SMA News & Perspectives - November 20, 2018 from 2018-11-20T00:00
SMA News & Perspectives - November 20, 2018 by SMA News Today
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#20 Interview With Randy Clark from 2018-11-16T00:00
In SMA News Today's 20th podcast episode, Community Editor Kevin Schaefer interviews veteran caregiver Randy Clark, who has worked with Kevin for four years.
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SMA News & Perspectives - November 16, 2018 from 2018-11-16T00:00
SMA News & Perspectives - November 16, 2018 by SMA News Today
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SMA News & Perspectives - November 14, 2018 from 2018-11-14T00:00
SMA News & Perspectives - November 14, 2018 by SMA News Today
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SMA News & Perspectives - November 9, 2018 from 2018-11-09T00:00
SMA News & Perspectives - November 9, 2018 by SMA News Today
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SMA News & Perspectives - November 7, 2018 from 2018-11-07T00:00
SMA News & Perspectives - November 7, 2018 by SMA News Today
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#19 - Interview With Michael Morale from 2018-11-07T00:00
SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale interview one another in a new format that will feature more roundtable-style discussions about SMA. This podcast t...
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#17 - Interview With Shane Burcaw from 2018-10-23T00:00
In SMA News Today's 17th podcast, Community Editor Kevin Schaefer interviews Shane Burcaw, author and Founder and President of the nonprofit "Laughing At My Nightmare."
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#18 SPECIAL EDITION - AveXis Announcement For FDA Approval Of AVXS101 from 2018-10-22T00:00
In this special edition of the SMA News today podcast, Forums Editor Michael Morale discusses AveXis' recent announcement that experimental SMA gene therapy AVXS-101 has been submitted to the US Fo...
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SMA News & Perspectives - October 19, 2018 from 2018-10-19T00:00
SMA News & Perspectives - October 19, 2018 by SMA News Today
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SMA News & Perspectives - October 18, 2018 from 2018-10-18T00:00
AveXis submits AVXS-101 to FDA.
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SMA News & Perspectives - October 12, 2018 from 2018-10-12T00:00
SMA News & Perspectives - October 12, 2018 by SMA News Today
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#16 - Interview With Brian Ronningen from 2018-10-11T00:00
In SMA News Today's 16th edition of Community Editor Kevin Schaefer's podcast, Kevin interviews Brian Ronningen -- a 48 year-old Human Resources professional who has SMA type 2 -- about his experie...
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SMA News & Perspectives - September 18, 2018 from 2018-09-18T00:00
SMA News & Perspectives - September 18, 2018 by SMA News Today
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#15 - Byron And Moriah Potter from 2018-09-17T00:00
In the 15th episode of the SMA News Today podcast, Community Editor Kevin Schaefer interviews Byron and Moriah Potter -- parents of two children who have SMA.
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SMA News & Perspectives - September 11, 2018 from 2018-09-11T00:00
SMA News & Perspectives - September 11, 2018 by SMA News Today
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SMA News & Perspectives - September 4, 2018 from 2018-09-04T00:00
New Spinraza drug delivery method + SMA and ketoacidosis.
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SMA News & Perspectives - August 30, 2018 from 2018-08-30T20:44:54
Testing Mestinon, approved in the U.S. and EU as a first-line treatment for myasthenia gravis, as a treatment for fatigue in SMA.
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SMA News & Perspectives - August 27, 2018 from 2018-08-27T00:00
SMA News & Perspectives - August 27, 2018 by SMA News Today
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SMA News & Perspectives - August 22, 2018 from 2018-08-22T00:00
New study on helping children with type 1 SMA cope with Spinraza injections + Kevin Schaefer discusses his experiences with being in theatre productions as a child.
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#14 - Interview With Amber Bosselman from 2018-08-22T00:00
In SMA News Today's 14th podcast, Community Editor Kevin Schaefer interviews college student Amber Bosselman, who talks about her diagnosis as a child, life growing up with the disease, and her pre...
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SMA News & Perspectives -- August 20, 2018 from 2018-08-20T00:00
The UK's NICE rejects Spinraza for use in the NHS due to price. UK SMA groups react with anger and disappointment.
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SMA News & Perspectives - August 14, 2018 from 2018-08-14T00:00
SMA Awareness Month + perspectives from SMA Forums Director Michael Morale
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SMA News & Perspectives - August 10, 2018 from 2018-08-10T00:00
New study to test effectiveness of experimental therapy AVXS-101 against Spinraza + perspectives on taking a vacation with SMA.
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SMA News & Perspectives - August 8, 2018 from 2018-08-08T00:00
New, promising gene therapy could hit clinical trials + sleep apnea in SMA.
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SMA News & Perspectives - August 6, 2018 from 2018-08-06T00:00
New research on SMA-LED, plus new perspectives from SMA News Today Forums Director Michael Morale.
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SMA News & Perspectives - August 3, 2018 from 2018-08-03T00:00
SMA News & Perspectives - August 3, 2018 by SMA News Today
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SMA News & Perspectives - August 2, 2018 from 2018-08-02T16:21:54
New vibration-based physical therapy for SMA patients.
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#13 - Interview With Ann Heathcote from 2018-07-31T00:00
SMA News Today Community Editor Kevin Schaefer interviews Ann Heathcote -- a college student with SMA type 2.
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SMA News & Perspectives - July 25, 2018 from 2018-07-25T00:00
New RNA research into SMA and features from the SMA News Today social clips.
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SMA News & Perspectives - July 23, 2018 from 2018-07-23T00:00
New Spinraza study + finding a good neurologist.
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SMA News & Perspectives - July 20, 2018 from 2018-07-20T00:00
SMA News & Perspectives - July 20, 2018 by SMA News Today
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SMA News & Perspectives - July 18, 2018 from 2018-07-18T00:00
New directives from the FDA on Newborn screening for SMA.
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SMA News & Perspectives - July 16, 2018 from 2018-07-16T15:19:05
New study demonstrates the benefits of neonatal screening for SMA + Michael Morale explores best practices for Spinraza injections.
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SMA News & Perspectives - July 12, 2018 from 2018-07-12T00:00
New research into cell autophagy and the SMN protein, and Kevin Schaefer's perspectives on passions and quality of life with SMA.
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SMA News & Perspectives - July 9, 2018 from 2018-07-09T16:49:20
News insights in the SMN protein and debut launch of Michael Morale's Alexa Flash Briefing segment.
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SMA News & Perspectives - July 7, 2018 from 2018-07-07T14:30:34
In this Flash Briefing: costs of SMA disease management and previews of SMA News Today's recent podcast interview with Kristin Walters.
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#12 - Interview With Kristin Walters from 2018-07-05T20:14:09
24 year-old Kristin Walters talks to SMA News Today Community Editor Kevin Schaefer about overcoming depression, travel to Europe with SMA, and her experiences with Spinraza.
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SMA News & Perspectives - July 3rd & 4th, 2018 from 2018-07-03T14:16:47
Update on Reldesemtiv and further reactions to the CureSMA 2018 Conference from SMA News Today Community Editor, Kevin Schaefer.
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#11 - Interview With Filmmaker Owen Kent from 2018-07-02T16:15:28
SMA News Today Community Editor Kevin Schaefer interviews Owen Kent, a filmmaker who has SMA. Kevin and Owen met at the 2018 CureSMA Conference in Dallas about his SMA diagnosis and experience with...
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SMA News & Perspectives - July 2, 2018 from 2018-07-02T15:15:02
New insights into how adolescence affects walking in type 3 SMA patients, and SMA News today Community Editor Kevin Schaefer talks about his experiences at CureSMA's annual meeting in Nashville.
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#10 - Friederike And Anna Wittchen From #CureSMA 2018 from 2018-06-21T16:28:59
#10 - Friederike And Anna Wittchen From #CureSMA 2018 by SMA News Today
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SMA News & Perspectives - June 4, 2018 from 2018-06-04T18:47:08
SMA News & Perspectives - June 4, 2018 by SMA News Today
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#9 - Interview With Israel & Rio Landa from 2018-06-04T18:04:48
SMA News Today Community Editor Kevin Schaefer interviews Israel and Rio Landa, both medical professionals whose son Mateo has type 2 SMA. Israel and Rio talk about their diagnosis experience, feed...
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SMA News & Perspectives - May 23, 2018 from 2018-05-23T15:05:39
SMA News & Perspectives - May 23, 2018 by SMA News Today
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SMA News & Perspectives - May 8, 2018 from 2018-05-08T20:52:56
SMA News & Perspectives - May 8, 2018 by SMA News Today
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SMA News & Perspectives - May 4, 2018 from 2018-05-04T16:12:31
SMA News & Perspectives - May 4, 2018 by SMA News Today
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#8 - Interview With Wheelchair Rapunzel Founder Alex Dacy from 2018-04-26T18:36:51
In SMA News Today's 8th podcast, Community Editor Kevin Schaefer interviews Wheelchair Rapunzel Founder Alex Dacy. Visit the site here: https://www.wheelchairrapunzel.com
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SMA News & Perspectives - April 24, 2018 from 2018-04-24T15:29:55
SMA News & Perspectives - April 24, 2018 by SMA News Today
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#7 - Interview With SMA Parent & Adyn's Dream Founder Brian Bucher from 2018-03-29T16:30:53
SMA News Today Community Editor Kevin Schaefer interviews Brian Bucher -- a parent of a child with SMA and founder of Aydn's Dream. Brian talks about his family's experience with the disease, his e...
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SMA News & Perspectives - March 28, 2018 from 2018-03-29T16:19:51
SMA News & Perspectives - March 28, 2018 by SMA News Today
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SMA News & Perspectives - March 7, 2018 from 2018-03-07T20:51:47
SMA News & Perspectives - March 7, 2018 by SMA News Today
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#6 - Paul Guarino, Founder of PG Sports from 2018-03-01T17:00:34
SMA News Today interviews PG Sports Founder Paul Guarino. Visit the PG Sports homepage at: https://pg-sports.com
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SMA News & Perspectives - March 1, 2018 from 2018-03-01T16:16:50
SMA News & Perspectives - March 1, 2018 by SMA News Today
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SMA News & Perspectives - February 20, 2018 from 2018-02-20T20:00:54
New research and insights into difficulties in swallowing caused by BSMA, and SMA News Today Community Editor Kevin Schaefer discusses the site's newest vlogger (video blogger), DeAnn Runge.
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SMA News & Perspectives - February 13, 2018 from 2018-02-13T16:28:38
SMA News & Perspectives - February 13, 2018 by SMA News Today
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#5 - Interview With Brynne Willis, Johns Hopkins University Graduate Student from 2018-02-13T15:47:58
In SMA News Today's fifth podcast, Community Editor Kevin Schaefer interviews Brynne Willis. Brynne is a graduate student at Johns Hopkins University where she is studying the psychological effects...
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#4 - Interview With Dr. Danielle Sheypuk from 2018-01-22T00:00
SMA News Today Community Editor interviews Dr. Danielle Sheypuk. Danielle is a renowned clinical psychologist with SMA who focuses her research on SMA and dating.
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SMA News & Perspectives - January 2, 2018 from 2018-01-02T17:02:10
SMA News & Perspectives - January 2, 2018 by SMA News Today
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#3 - Interview with Amazon Operations Manager Josh Garrison from 2017-12-12T19:00:04
In SMA News Today's third podcast, Community Editor Kevin Schaefer interviews Josh Garrison -- a person with SMA type 2 who works as an operations manager for Amazon. Josh discusses his work at Ama...
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SMA News & Perspectives - November 30, 2017 from 2017-11-30T21:00:14
SMA News & Perspectives - November 30, 2017 by SMA News Today
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SMA News & Perspectives - November 28, 2017 from 2017-11-30T20:59:47
SMA News & Perspectives - November 28, 2017 by SMA News Today
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SMA News & Perspectives - November 28: Novel Tests and SMA Bloggers from 2017-11-28T16:35:52
SMA News & Perspectives - November 28: Novel Tests and SMA Bloggers by SMA News Today
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#2 - Interview With Author Ben Mattlin from 2017-11-13T23:26:04
SMA News Today Community Editor Kevin Schaefer interviews author Ben Mattlin. His new book, "In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Inter...
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SMA News & Perspectives - November 1: SMN & Magic Wheelchair for Halloween from 2017-11-01T16:22:10
Listen to the latest insights into the mechanisms of SMN and how it could impact SMA diagnosis, as well as the Magic Wheelchair organization and how they are helping kids with SMA development amazi...
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SMA News & Perspectives - October 26: New CureSMA Funding from 2017-10-26T16:21:32
Listen to the latest news on CureSMA funding for 2018.
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SMA News & Perspectives, October 24: Amino Acid Diet - JACO Robotic Arm from 2017-10-24T17:19:16
Today's flash briefing talks about the amino acid diet in SMA management, and KINOVA's JACO robotic arm for SMA patients.
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#1 - Interview With Christine Getman of Magic Wheelchair from 2017-10-19T16:20:05
In SMA News Today's first podcast, Community Editor Kevin Shaefer interviews Christine Getman Director of the organization Magic Wheelchair. She talks about her work at Magic Wheelchair, experience...
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SMA News for October 18: NORD 2017 / Water Therapy / Experimental Drug from 2017-10-18T19:02:36
Read about SMA News Today at NORD 2017, perspectives on how water therapy can really help SMA patients, and a new, promising experimental therapy beginning clinical trials.
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SMA News For September 29: Novartis' Resumption of Branaplam Clinical Trial from 2017-10-11T17:41:13
Update on Novartis' resumption of Branaplam clinical trial: https://smanewstoday.com/2017/09/28/sma-type-1-clinical-trial-of-branaplam-resumes-after-2-year-hiatus-says-novartis/
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SMA News For September 9: Valproic Acid with L-carnitine Not Effective for SMA from 2017-10-11T17:40:46
Valproic acid combined with L-carnitine for effective in treating SMA: https://smanewstoday.com/2017/09/07/valproic-acid-fails-to-improve-survival-of-sma-type-i-infants-in-carnival-clinical-trial/
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SMA News & Perspectives, September 22: SMA Documentary Shown at Boston Rare Disease Film Festival from 2017-10-11T17:40:11
SMA Documentary Shown at 2017 Boston Rare Disease Film Festival: https://smanewstoday.com/2017/09/21/boston-rare-disease-film-festival-to-feature-sma-documentary-life-and-atrophy/
How to c...
SMA News & Perspectives For September 20: Purchasing a New Wheelchair from 2017-10-11T17:39:13
New Wheels, New Freedoms: https://smanewstoday.com/2017/08/15/wheelchair-new-wheels-new-freedoms-sma-patient/
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SMA News & Perspectives - October 10: An SMA Highlight on NORD 2017 / SMA Caregivers from 2017-10-11T17:38:29
Read about the SMA focus at the 2017 NORD Summit in Washington DC: https://smanewstoday.com/2017/10/10/nord-rare-disease-summit-to-debate-issues-crucial-to-sma-like-fda-therapy-approvals-prices/
SMA News & Perspectives - October 6, 2017 from 2017-10-11T17:38:06
SMA News & Perspectives - October 6, 2017 by SMA News Today
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SMA News - October 3: AveXis to Begin Pivotal AVXS-101 Clinical Trial for SMA / SMA Books from 2017-10-11T17:36:50
AveXis to Begin Pivotal AVXS-101 Clinical Trial for SMA: https://smanewstoday.com/2017/10/03/fda-approves-pivotal-trial-of-avxs-101-for-sma-type-1/
A List of Great SMA Books: https://smane...
SMA News For September 14: Kevin Schaefer's New Role at SMA News Today from 2017-10-11T17:36:21
Scientists Use Skin Cells to Create Motor Neurons: https://smanewstoday.com/2017/09/12/sam-research-may-get-boost-from-study-using-skin-cells-to-create-human-motor-neurons/
Kevin Schaefer'...