Simply Stated: Updates in Neuropathy Ataxia and Retinitis Pigmentosa (NARP) Syndrome

Neuropathy ataxia and retinitis pigmentosa (NARP) syndrome is a rare, maternally-inherited condition caused by mutations in mitochondrial DNA, affecting the energy-producing structures within cells. The condition typically begins in childhood or early adulthood and presents with a wide range of symptoms. These may include learning difficulties, muscle weakness (particularly around the eyes), uncoordinated movements (ataxia),…

Getting Ready for the 2026 MDA Clinical & Scientific Conference

It’s that time of year when we come together to connect, share, learn—while accelerating progress in neuromuscular (NMD) healthcare and scientific progress. This conference is one of the most meaningful gatherings in the (NMD) community—bringing together clinicians, researchers, industry partners, advocates and individuals living with NMD. The four-day conference promises rich content, networking, and collaboration…

What to Know About Changes to Food Assistance through SNAP

Funding for the Supplemental Nutrition Assistance Program, which provides food assistance to more than 42 million children and adults across the country – including 4 million people with disabilities – will run out in November as a result of the federal government shutdown. Unless the administration takes emergency measures, like it did with the Special…

Quest Podcast: Voices of Inclusion: Celebrating NDEAM with Disability:IN

October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, Executive Vice President of Strategy & Programs at Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion,…

Cooking with a Disability? Yes, Chef!

A chef with a disability adapts her cooking for her abilities, using mobility equipment, accessible tools, and shortcuts.

MDA Ambassador Guest Blog: Why I am Speaking Up for Our Community at MDA Hill Day

Faith is 14 years old and lives in Texas. She is a freshman in high school. Faith served as the MDA National Ambassador in 2018 and 2019. She is currently serving as her Freshman Class President. Faith loves the time she has spent at MDA Summer Camp, and in her spare time she loves to…

MDA Ambassador Guest Blog: How Adaptive Sports Changed My Life

Brayden is 17 years old and has been playing wheelchair basketball since he was 8. He is also a wheelchair track and field athlete. Brayden lives with Charcot-Marie-Tooth (CMT) Type 1A. He first became an MDA Ambassador when he was 5 years old and he loves supporting MDA’s mission. Brayden is consistently on the honor…

In Case You Missed It…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…

Employer Matching Programs Double the Impact

Anybody who has made a monetary donation to support MDA’s mission knows well that their dollars go a long way to change the lives of those living with neuromuscular disease. But what many might not know is that corporate matching programs create an opportunity to double that donation – and double the impact. Companies with…

MDA Ambassador Guest Blog: Entrepreneurship, Advocacy, and Innovation: Building a More Accessible Future from the Inside Out

Owen Kent is the co-founder and Chief Marketing Officer of Assistive Technology Development (ATDev), a startup creating innovative mobility devices that empower people to live independently and confidently. As a lifelong wheelchair user with spinal muscular atrophy (SMA) Type II, Owen draws on his lived experience to design user-driven technologies, advocate for disability rights, and…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. 

QUEST PODCAST

The Quest podcast, proudly presented by the Muscular Dystrophy Association, is part of the Quest family of content. Hosted by Quest Editor-in-Chief, motivational speaker and writer Mindy Henderson.

Episode 57- Voices of Inclusion: Celebrating NDEAM with Disability:IN

October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, Executive Vice President of Strategy & Programs at Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion,…

Episode 56- Precision Medicine: Mapping the Genetic Code for New Treatments

In this Quest Podcast episode, we chat with Dr. Stephan Züchner, Dr. Conrad “Chris” Weihl, and the Interim Chief Research Officer of the Muscular Dystrophy Association, Dr. Angela Lek.  Leaders in the field of genetic mapping, all three have devoted their time and expertise to research and treatments for neuromuscular diseases.  Their goal is to…

Episode 55- Unpacking Disability Pride: Voices from the MDA Community

In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to pride, emphasizing how important community has been in helping her feel seen and valued.  While Fred offers a perspective rooted in resilience and advocacy, discussing…