MDA Ambassador Guest Blog: Breaking the Chains of Stigma in My Arab Community

Samaher (Sam) Abuzahriyeh is 33 years old and lives in Millbrae, CA. She was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 6 and began using a power wheelchair at age 17. She enjoys writing poetry in Arabic, watching shows across genres and languages, exploring accessible trails and scenic spots in the Bay Area with…

Clinical Research Alert: Natural History Study of Individuals with Cardiomyopathy Associated with FRDA

Researchers at Lexeo Therapeutics are seeking individuals with cardiomyopathy associated with Friedreich’s Ataxia (FRDA) to participate in an observational study (CLARITY-FA). The assessments and questionnaires from this study will help to provide valuable data about heart disease in FRDA and advance Lexeo’s gene therapy research. The study This is an observational study, which means that participants…

Letters from Lily: Advice for Parents of Children with Neuromuscular Disease

Hello! For those of you who don’t already know me, my name is Lily and I live with Charcot-Marie-Tooth disease (CMT). While I am not a parent, these recommendations come directly from my lived experience growing up with neuromuscular disease. This blog candidly reflects what truly helped me build confidence, self-worth, and a positive identity…

Clinical Research Alert: Real World Study of Male Fertility Following Risdiplam Treatment

Researchers at Genentech Inc. are seeking adult males treated with risdiplam (Evrysdi) for spinal muscular atrophy (SMA) to participate in an observational study (MARLIN) to assess the effects of treatment on fertility. Risdiplam is FDA-approved for treating SMA in pediatric and adult patients. The current study aims to better understand the fertility experiences of men with…

Quick Guide: Understanding Programs and Benefits for People with Disabilities

Here are the programs and benefits you should know about to ease the financial burden of living with a disability and build economic security.

Tis the Season for Holiday Hacks and Tips

For some, the holiday season means the hustle and bustle of hosting, traveling, gift giving, and gatherings. For others, the end of the year is a time to slow down, cozy up, and practice gratitude. Whether you are hosting and traveling this year or spending quiet time reflecting, we have everything you need for the…

5 Things Advocates Should Know: The Alleviating Barriers for Caregivers Act

November is National Family Caregivers Month, and it is important to MDA to uplift the importance of family caregivers in the neuromuscular community. Due to decades of underinvestment in paid care, and with welcome breakthroughs in research leading to longer lives for many, the often-invisible frontline of family caregivers is under increasing pressure as the…

The Hidden Power of Self-Care in Caregiving

Four family caregivers share the everyday ways they incorporate self-care into their lives, so they can care for their loved ones.

Meet Our 2025 MDA Quest Photo Contest Winners

People living with neuromuscular diseases shared their meaningful moments in the Quest Media photo contest. Here are this year’s winner and three runners-up.

A Lifetime of Learning: From college to a Career in Disability Advocacy

Naomi Hess pursues a lifetime of education in college and beyond to learn about her interests and progress in her career.

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…