Guest Ambassador Blog: What #MDAstrong Means to Me

Saida Mahoney is a college student from Oakland, CA, where she is majoring in performing arts. She is a dedicated advocate and activist for people living with disabilities. Saida enjoys traveling and giving back to others through community service. She lives with congenital muscular dystrophy, which has affected her ability to participate fully in school…

Community Voices: Disability Is Not a Disappearing Act

“My name is Chase the Entertainer. I’m a mentally ill, physically disabled, Native American, professional magician, and I only look like one of those things.” This is how I open every show. It gets a laugh, which is good, because I need that laugh. Not just because it loosens the room, but because it gives…

MDA Ambassador Guest Blog: Life Lessons from My Service Dog (and Best Friend)

Lyza Weisman (23) was diagnosed at 13 months old with spinal muscular atrophy (SMA). She was raised in the deep mountains of Colorado before attending Loyola Marymount University in Los Angeles for her undergraduate degree. Lyza graduated in May 2024 and moved to Williamsburg, Virginia, where she is now a second-year student at William & Mary Law School. She loves…

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…

Clinical Study Alert: Phase 2 Study of Brogidirsen in Boys with DMD

Researchers at NS Pharma are seeking boys with Duchenne muscular dystrophy (DMD) amenable to exon 44 skipping therapy to participate in a phase 2 clinical study (clinicaltrials.gov ID: NCT05996003) of their investigational therapy brogidirsen (NS-089/NCNP-02-201). DMD is caused by gene mutations that lead to the loss of the dystrophin protein, which is important for the structure…

MDA Advocacy Team Reports Updates in Newborn Screening Legislation

This year has been an eventful year for newborn screening in neuromuscular disease, with potential further progress on the near horizon. We began 2025 with all 50 states screening for spinal muscular atrophy (SMA), meaning nearly all babies born in the United States can be screened for SMA leading to a rapid diagnosis and near…

Head Back-to-School in Style with Adaptive Fashion

For many families with kids, the end of summer includes preparations for heading back to school for a new year of growth, learning, and activities. On top of school supplies, schedules, and meeting new teachers and classmates – this time of year also usually means back-to-school clothes shopping. As the fashion industry continues to make…

Clinical Research Alert: Phase 1/2 Study of SGT-003 in Boys with DMD

Researchers at Solid Biosciences are seeking boys with Duchenne muscular dystrophy (DMD) to participate in a phase 1/2 clinical trial (INSPIRE DUCHENNE) to evaluate the safety and efficacy of the investigational gene therapy (SGT-003). DMD is caused by the loss of the dystrophin protein, which is important for the structure and function of muscle cells. SGT-003…

Five Common Corticosteroid Questions and Considerations

Find answers to the five most common corticosteroid questions as well as other considerations if you’re prescribed them to treat a neuromuscular disease.

MDA Ambassador Guest Blog: Someone Like Me

My name is Santana Gums and I have LGMD-2b. I live in Arizona and work as a Legal Assistant. Back in February of this year, I attended the Arizona Muscle walk, which just so happened to be my first ever MDA event. Being new to the community, I wasn’t sure what to expect, who would…

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 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…

Episode 54- Service Dogs, Inc. – Paws with a Purpose

In this Quest Podcast episode, we chat with a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. Under her guidance, Service Dogs, Inc. has led the industry in combining…

Episode 53- Invisible People: Making the Rare Seen

In this Quest Podcast episode, we chat with a former pharmacist turned singer/songwriter who lives with Generalized Myasthenia Gravis. Dania Quill has devoted her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer through song while sharing stories of resilience and positivity.  While…