Podcasts by Two Rare Mama Bears
Two Rare Mama Bears, a Cure CMD Podcast - where we discuss all things Congenital Muscular Dystrophy and Rare Disease...All subtypes, ages, abilities and topics with the intent to connect the CMD community. This podcast is about bringing together affected individuals, their family, researchers, clinicians, industry, and policy-makers to have conversations with the goal of moving the needle on the mission of Cure CMD. Hosts: Megan Meyer and Matty Manley.
Further podcasts by Cure CMD (Matty Manley & Megan Meyer)
Podcast on the topic Gesundheit und Fitness
All episodes
054 - Giving Tuesday Now from 2020-05-05T14:31:37
Just like November's #GivingTuesday, #GivingTuesdayNow is not exclusively a fundraising day. It's an opportunity for people around the world -- including the Cure CMD community -- to stand together...
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053 - STABLE Accounts and COVID-19 stimulus checks from 2020-04-29T23:41:44
ABLE Accounts give people with disabilities more independence and financial security by providing tax-free savings plan for disability-related expenses without losing needs-based benefits. We are j...
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052 - I Stay Home For Rare from 2020-04-13T21:09:19
Are you living with a rare disease or a parent/caregiver to someone who is? I Stay Home For Rare™ is a campaign and fund for those standing with us in this cause. Levi Gershkowitz joins us to share...
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051 - Only the vulnerable will be at risk, your "only" is my everything from 2020-03-22T15:29:55
Matty & Megan do a check-in episode after the first week of COVID-19 quarantine at home…. Including a comparison to how this experience is similar to winter for medical complex families, a discussi...
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050 - Pro tips from a seasoned NIH visitor with Kierra Sunris from 2020-03-08T19:12:26
Clinical research studies occurring at National Institutes of Health (NIH) utilize people as volunteers and collect data as a means of developing new treats and medications for diseases and conditi...
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049 - Understanding the basics of drug development - Why it's taking so long and so much money from 2020-02-06T17:08:49
Drug Development is the process by which potential treatments discovered in a research laboratory become approved treatments for affected individuals. In this episode, Rachel Alvarez (Cure CMD Exec...
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048 - Caring for the Caregivers - Angel Aid Cares, Cristol O'Loughlin from 2020-01-25T14:09:17
“Hardships often prepare ordinary people for an extraordinary destiny”, a quote by C.S. Lewis that resonated with Cristol Barrett O’Loughlin after witnessing the caregiving her family provided whil...
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047 - Rasheera Dopson, Chronicling multiple rare diseases in “Beauty with a Twist” from 2020-01-09T01:45:28
Rasheera Dopson joins us to discuss efforts she has taken to chronicle her life with multiple co-existing rare diseases/chronic health conditions, and the intersection of also identifying as an ind...
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046 - Caitlin Parker, Child Life Specialists from 2019-12-12T23:17:53
“If a teacher and a nurse combined into a career” - that’s how Caitlin Parker quickly describes her career if she only had 5 seconds to share with you her passion for Child Life mission and vision....
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045 - Anticipatory Grief, Jennifer Siedman - Courageous Parents Network from 2019-11-27T22:08:17
Jennifer Siedman, Patient Disease Outreach Coordinator at Courageous Parents Network, joins us to talk on the topic of: Anticipatory Grief - grief that occurs before death or grief that comes with ...
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044 - Secondary grief explored, with Lyn & Kate Baier - Nemaline Myopathy community from 2019-11-17T20:57:18
Greta is a typical 11-year-old 6th grader who wants to go to school dances and hang out at her friends’ homes, but what is different for Greta is that these experiences always include a parent or n...
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043 - We Carry Kevan… with author, Kevan Chandler from 2019-11-01T15:23:24
As an introduction to our November book club, Kevan Chandler sat down with us for this coffee house interview about his book “We Carry Kevan”, an inspiring story of camaraderie of six friends takin...
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042 - Failure is not an option from 2019-10-20T19:15:40
A six-year old “honorary astronaut” has his wish come true - to meet a real-life astronaut, Anne McClain, from his hometown, Spokane, Washington. Listen to this podcast episode to learn how the po...
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041 - Live BEYOND expectations...not live TO the expectations - Rachel Alvarez from 2019-10-04T12:18:28
Rachel Alvarez's episode 2 of 4 in her series with us (her 1st episode is ep. 033).... When faced with adversity (and at times, multiple layers of it) individuals can find themselves struggling to ...
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040 - Bench to Bedside: Genetic Counseling (Casie Genetti, CGC) from 2019-09-17T14:05:29
Diligent work performed at a laboratory bench results in advances in the healthcare industry and benefits for the patients it serves. Translation of science to the community through medical interve...
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039 - The White Space {Caitlin Parker} from 2019-09-06T00:08:10
Caitlin Parker, a North Carolina mama to a sweet young daughter with LAMA2, does a little bit of a tongue in cheek rant on accessible parking - but also educates listeners on laws that apply to rig...
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038 - I love it when a plan comes together from 2019-08-23T18:38:15
Matty and Megan talk about SciFam take-aways and how they were processing information they valued from the conference, and further - how to communicate it to their medical teams. They then chat on ...
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037 - Pity Party from 2019-08-09T01:17:09
Matty and Megan find themselves in a bit of a pity party (or stuck in a rut) lately. While occasionally pity parties can comfort you, sometimes you keep asking yourself what did you do to deserve w...
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036 - Connecting rare disease individuals to researchers - Patient Registry & Sanford CoRDS from 2019-07-25T13:48:21
Rare disease individuals, including those with neuromuscular disorders, are often longing for a treatment, and hopefully one day… a cure. When planning a clinical trial, it is important for researc...
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035 - Always on the move - Patrick Veltri from 2019-07-08T17:32:50
“Life is about how you react to situations and the decisions you make” - insightful words from Patrick Veltri, a Canisius College student, living in Buffalo, NY who has taken his passion of sports ...
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034 - Don't poke the bear from 2019-06-25T13:42:09
There is only so much a Mama Bear can take when she is defending her cubs…. and why do special needs or medically complex parents feel the need to defend? Fight or flight? In this episode, Matty an...
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033 - Epic Rachel Alvarez, Cure CMD's Executive Director | Rachel’s series - Part 1 from 2019-06-12T18:35:23
If you are a believer in fate, this episode is for you! Listen as Cure CMD’s Executive Director, Rachel Alvarez, tells her own personal story of how someone coming into her life at the most unexpec...
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032 - Not looking in the rear view mirror, Brendan Sullivan from 2019-05-30T19:13:28
Cure CMD’s commitment is to create community for ALL subtypes - we’ve got another story from the dystroglycanopathy, cognitively impaired community. In this episode, Brendan Sullivan shares the sto...
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031 - Wheelchair Rapunzel...Inclusion, self-love & body positivity with Instagram Blogger, Alex Dacy from 2019-05-15T12:14:07
Deep dive into learning more about Instagram blogger Alex Dacy, also known as Wheelchair Rapunzel, as she discusses her Spinal Muscular Atrophy (SMA) diagnosis, path to becoming a blogger and socia...
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030 - NORD Rare Action Network from 2019-04-30T13:00:19
The Rare Action Network (RAN), powered by the National Organization for Rare Disorders (NORD), is a grassroots advocacy effort that serves to connect and empower a unified network of individuals an...
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029 - If mama ain’t happy…. Respite, taking a break, mom vacation from 2019-04-16T00:38:40
The demands of providing 24/7 care can be physically and emotionally draining for caregivers. Without breaks to maintain their own mental and physical wellness, caregivers can experience burnout. W...
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028 - Local Advocacy, Mary McDirmid 100% In from 2019-04-02T18:53:30
"What can I do?" After diagnosis many of us feel lost and helpless. We want to take action but don't know how. We want to feel like we are fighting back in some way. Mary McDirmid is doing just thi...
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027 - Rawness of a newly diagnosed family from 2019-03-18T00:11:57
On a weekly basis we hear of a family that enters the world of a diagnosis they didn’t expect (or maybe they did)....either way, it’s a unique world full of challenges. In this episode we visit wit...
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026 - “Dads Take Over” Two Rare Daddy Bears from 2019-03-01T06:03:08
When the moms are away in Washington D.C. for Rare Disease Week on Capitol Hill, the dads are going to play…..The dads decided to take over the microphone and record their perspectives of being CMD...
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025 - Current state of CMD research with Cure CMD Scientific Director from 2019-02-12T12:07:20
Leading into Rare Disease Week on Capitol Hill when a team of more than a dozen CMD community members from around the U.S. will advocate for policies, greater funding, and support for CMD...we thou...
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024 - Sibling perspectives on CMD from 2019-01-31T00:07:55
Having a sibling with special needs is a reality many for many children, impacting the whole family. It’s a family dynamic that can both strengthen and stress even the tightest of bonds. Siblings o...
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023 - Adaptive clothing...one of our own is revolutionizing the industry in a BIG way! from 2019-01-15T01:13:27
As a leader in the fashion industry for 20+ years, in 2014 Mindy Scheier found herself on a journey discovering the huge need for adaptive clothing when her then 8 year son, Oliver, expressed the d...
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022 - Building Resilience In The New Year from 2019-01-04T18:27:03
As we start off a new year, it’s time to evaluate our capacity to prepare for disruptions, recover from shocks and stresses, and adapt and grow from disruptive experiences. This episode reviews tip...
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021 - If you don’t laugh, you’ll cry: Kari Vondrak from 2018-12-13T11:50:06
If you don’t laugh - you’ll cry….real life stories that you wouldn’t believe actually happened to one special needs family! This episode introduces us to the Vondrak family (Kennedi - age 14, Jayci...
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020 - Holiday stressors & challenges for families with special needs from 2018-11-28T17:58:33
With the holiday season upon us, Matty and Megan discuss potential stressors and challenges that families with special needs may encounter: dietary, sensory, accessibility, routine, infection contr...
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019 - Defining moments from 2018-11-15T17:22:32
Have you taken an assessment of what your defining moments are in your life and how you got there? What frames the efforts you chose to put towards your time, treasure, and talents? In this episode...
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018 - Super Emmett!...A glimpse into Walker Warburg Syndrome from 2018-11-09T02:00:57
Meet Emmett, an 18 month old Montana superhero! His superhero powers are discovered when you enter his secret world. Emmett lives with Walker Warburg Syndrome (WWS), which is a phenotype presentati...
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017 - Every life is worth living and every voice is worth being heard! from 2018-10-23T01:39:40
Would you like your voice to be heard by your elected officials? Think that you may like to know more about advocacy? This episode is a quick crash course into EveryLife Foundation, Rare Disease L...
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016 - Hanging out in the hole from 2018-10-16T04:38:16
Two of our youngest (and most discussed) guests, Lilly & Matthew, kick this episode off for us! In episode 010 “The Hole”, you heard Matty and Megan share their impression of special needs family f...
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015 A teen, a bike, and a mIssion from 2018-10-09T02:39:45
At 17 years old, this extraordinary young man is living life as an elite triathlete, a big thinker, and an individual with a rare disease. Motivated by how exercise improved his symptoms of his Hyp...
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014 - Beyond The Chair from 2018-09-25T13:00:19
Andrew “Drew” Shelley, lives the American Dream. He leads a successful life as an engineer and single bachelor. Unhappy with his day job Andrew wants more from his life, so he sets out on a backpa...
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013 - The Ataxian from 2018-09-18T13:00:16
“The Ataxian” follows Kyle Bryant, a charismatic Californian with Friedreich’s ataxia, whose ability to walk and speak is impaired, as he tirelessly works to raise awareness and funds for research ...
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012 - I'll Push You from 2018-09-04T04:00:16
I will push you: A Camino Journey of 500 Miles, Two Best Friends and One Wheelchair
"I'll Push You: A Real-Life Inspiration" tells the story of two lifelong friends, Justin Skeesuck and Pa...
011 - Back To School from 2018-08-28T06:50:21
The transition from summer back to school can be overwhelming for everyone, especially families of individuals with disabilities. To help ease the stress and smooth the transition for families, we ...
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010 - The Hole from 2018-08-09T02:13:49
The Mama Bears go on a bit of a rant in this episode - listen to see what our reference to “The Hole” is all about.
Impartial staff, long waitlists, lack of funds? We have all been there....
009 - Traveling With a Disability from 2018-07-17T15:30:27
As individuals with disabilities will find out, standards of accessibility aren’t always universal - it only complicates things to encounter these challenges while traveling! Two Rare Mama Bears di...
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008 - Team Stay Strong {Muscle Club Apparel & Love Bug Apparel with Jeff & Nicola Smith} from 2018-06-26T10:36:04
The Smith family lets their son, Kaden, set the stage for their outlook on life with congenital muscular dystrophy - which is to stay strong and stay positive. Kaden doesn’t let his diagnosis of LA...
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007 - Clinical perspective of each CMD subtype, Dr. Reghan Foley from 2018-06-12T02:53:58
Get ready to take in a lot of valuable information! In this episode we’re honored to be joined by A. Reghan Foley, MD, Staff Clinician 2 at the National Institutes of Health, Neuromuscular and Neur...
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006 - Adaptive Driving And Adaptive Vehicles - Simon Cantos from 2018-05-29T04:00:59
Thousands of people with mobility limitations have found independence via adaptive driving and adaptive vehicles. In this episode we learn about various vehicle conversion options as well as adapti...
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005 Going Outside Of Comfort Zone from 2018-05-15T02:58:41
As family or community members within the Congenital Muscular Dystrophy community, resiliency is paramount to thriving in complex and busy lives. In this episode we talk about stress and worry asso...
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004 - [Angela] Young Adults & Transition To College from 2018-05-08T07:00:16
Transition from teenager to college-bound can be hard for any young adult, and frequently is increasingly more challenging for those with a disability to factor in.
Angela Maccarrone is a ...
003 - [Liam] Young Adults & Transition To College from 2018-05-08T06:00:06
Transition from teenager to college-bound can be hard for any young adult, and frequently is increasingly more challenging for those with a disability to factor in.
Liam Miller is currentl...
002 - Living in the mayhem: Kyle Gagner & Levi’s Hope from 2018-05-01T07:00:06
Imagine being told your child has an ultra-rare disease that is life-limiting, muscle-wasting, and due to a spontaneous genetic mutation...simply put, this child’s muscles will get weaker faster th...
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001 - Million Dollar Bike Ride from 2018-05-01T06:00:06
For the 5th year in a row, a team of cyclists connected to the Cure CMD community will participate in the Million Dollar Bike Ride (MDBR) on May 20th, raising money for rare disease research throug...
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000 - What Is Cure CMD from 2018-05-01T05:00:06
As a companion to our first episode “Welcome to Two Rare Mama Bears”, this episode is a deeper dive into Cure CMD - covering: what is rare disease, what is Cure CMD and it’s CMD subtypes, and the C...
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000 - Welcome to Two Rare Mama Bears from 2018-05-01T04:00:06
Welcome to the first podcast of Two Rare Mama Bears, a Cure CMD Podcast. In this episode Matty and Megan discuss the purpose and goals of the podcast, how they met each other, their respective diag...
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Pre-Launch Introduction from 2018-04-28T13:47:50
Welcome to a *BONUS EXTRA* pre-launch introduction before our first episode of Two Rare Mama Bears, a Cure CMD Podcast. In this episode we talk about our excitement, a couple *SPOILER ALERTS*, and ...
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