Behind the Drug: Nusinersen (Spinraza) for SMA

Nusinersen (Spinraza) changed the game for people with SMA. Learn how it became the first FDA-approved therapy and what it means for families.

MDA Ambassador Guest Blog: Built to Rise – Strength Forged Through Every Challenge

Darlene, who was diagnosed with spinal muscular atrophy (SMA) type 3 at age 19, just turned 55 years old. She has spent her life proving that challenges do not define her, but that perseverance does. Darlene has been blessed with 32 years of marriage, two amazing daughters, a wonderful son-in-law, and a thriving 20+ year career as a…

Clinical Research Alert: At-Home Research Study in People with DM1

Sanguine Biosciences, a provider of at-home clinical research services, is seeking people living with myotonic dystrophy type 1 (DM1) to participate in a natural history. The goal of this research is to enhance the understanding of DM1 to support development of new diagnostic and treatment options for people living with the condition. The study This study…

Community Voice: Why We Decided to Name MDA in Our Wills

Probably like you, recent years have altered our lives in ways both expected and completely unforeseen. Some of these changes have led us to review certain areas of our lives, especially our plans for the future. When our daughters were born, we saw a lawyer and wrote wills to protect them in the event that…

Behind the Drug: Risdiplam (Evrysdi) for SMA

Just a decade ago, there were no SMA treatments. Now risdiplam (Evrysdi) is changing lives. Learn how it went from a lab to an FDA-approved drug.

Simply Stated: Updates on Friedreich’s Ataxia (FRDA)

Friedreich’s ataxia (FRDA) is an inherited neuromuscular disease that primarily impacts the nervous system and heart and affects about one in 50,000 people worldwide. FRDA is characterized by a slow, progressive loss of limb coordination (ataxia) and effects on speech and swallowing. Multidisciplinary care can improve the quality of life of people living with FRDA…

MDA Ambassador Guest Blog: Parenting, LGMD, and Choosing Joy

Chris Carroll is 41 years old and lives with his wife Joy and two children Jordyn (4) and Brogan (who will be 3 soon). Chris works for Mullen Coughlin LLC. A data privacy law firm in Devon Pa. In his free time, Chris loves going to Phillies games with his family and going out to…

MDA Ambassador Guest Blog: The Joy of Accessible Sailing

Mike Huddleston is 62 years old. He is originally from California and now lives in Maryland.  Mike was diagnosed with spinal muscular atrophy (SMA) Type 3 at the age of 16. He started using a power wheelchair in 2015.  He and his wife of over 40 years, Debbie, are both retired. Mike volunteers with several organizations…

Expedia’s New Initiative is Transforming Accessibility for Short-Term Rentals

Expedia Group is not only opening the door, but widening the doorway, when it comes to accessible short-term rentals (STR) and vacation homes. As one of the largest travel companies in the world, hosting travel metasearch engines like Vrbo, Tavelocity, and more, the initiative to increase accessible options has the potential to transform accessibility in…

Quest Podcast: 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…

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…