Two Rare Mama Bears

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 and Megan explore recent experiences that have evoked a full on mama bear response - and also what each are doing to try and discern when to let the mama bear instinct out and when to let it lie.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 unexpected time was not by accident (as it turns out), and would actually set the trajectory for her future career path. Rachel explains how and when Cure CMD formed, when she became involved, what a day/week/month workload looks like for her, and explains a variety of resources she and a volunteer base have put in many countless hours to curate for the CMD community. Enjoy learning from “Epic Rachel” in this first of a 4-part series with her!

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 story of his two beautiful daughters with Walker-Warburg Syndrome that ultimately took their lives - and then how he’s not looked in the rear view mirror since and what he’s doing to make a difference. In terms of cognitive impairment and muscle weakness - these families truly exemplify warrior/mama-dada bears! Together - Brendan is a great example of making ripples of change in congenital muscular dystrophy and while also embracing neurodiversity.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 social media influencer, as well as how she found herself in the advocacy, inclusion, self-love, and body positivity space while also an apparel merchandiser. She even discusses a recent mental health challenge.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 and organizations with tools, training and resources to become effective advocates for rare diseases through national and state based initiatives across the United States. A rare disease is defined as one that affects less than 200,000 people and there are currently more than 7,000 rare diseases known to exist. With rare diseases, affecting 25-30 million Americans, RAN and NORD stand for equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease. In this episode we learn about RAN from Cure CMD community member and RAN state ambassador for Ohio, Charlene York, as well as from RAN Grassroots Advocacy Manager, Rose Avellino. Find RAN online at: www.rareaction.org

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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. With no trusted, competent, caring person to turn to for respite, it can be difficult to maintain a household, run errands, exercise, or even take a shower. Respite care provides caregivers with the opportunity for a temporary rest from their caregiving duties. Mom/dad vacations are options for quick getaways to recharge and renew spirit without breaking the bank or sending the other caregiver running for the hills.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

"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 this in the Spokane community. After her daughter Ruthie was diagnosed with Tuberous Sclerosis Complex (TSC) Mary has been 100% in on making Spokane Washington the best it can be for patients and families impacted by rare disease.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 with Lindsey Eubanks, as she explores the raw emotions she felt and a few tips for surviving the first year. Their spunky son, Lucas, was diagnosed one year ago with Spinal Muscular Atrophy, type 2. Lindsey is on a mission to share Lucas’ story so others can identify with similar experiences - particularly the feelings leading up to and right after diagnosis. Find Lucas and Lindsey on Facebook at: www.facebook.com/lucasbecomingbionic

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

Listen to this podcast on Apple podcast, Google Play, SoundCloud or Stitcher. Stream online at www.curecmd.org/podcast

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 parents and what it has been like to watch their wives host a podcast.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

Listen to this podcast on Apple podcast, Google Play, SoundCloud or Stitcher. Stream online at www.curecmd.org/podcast

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 thought it would be good to check in with Gustavo Dziewczapolski, PhD, Cure CMD Scientific Director, on the current state of CMD research.

Quick find for each subtype:

1. SEPN1 - 05:45

2. LMNA - 15:05

3. Collagen VI - 21:46

4. LAMA 2 - 31:35

5. a-Dystroglycanopathy - 38:09

Funding portfolio online: https://www.curecmd.org/funding-portfolio

Dr. Dziewczapolski received his Master's degree from the University of Buenos Aires, followed by a Ph.D. in Neuropharmacology. Before joining Cure CMD in September 2016, he researched neurological diseases for eighteen years at UC San Diego and the Salk Institute. He is the father of two beautiful daughters, Tatiana and Rafaela, who continue to challenge and inspire him. And to balance his addiction to chocolate, he enjoys surfing and soccer.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears