Simply Stated: Updates in Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic lateral sclerosis (ALS) is a rare, progressive neurodegenerative disease that leads to muscle weakness, loss of physical function, and ultimately death, often within three to five years from symptom onset. ALS is caused by gradual degeneration of motor neurons, the nerve cells responsible for controlling voluntary muscles. As these neurons die, the muscles they control…

MDA Ambassador Guest Blog: How the Power of a Few People (and a Dog) Can Change Your World

David Daw is 56 years old and lives in Kingston New York with his wife of 36 years. They have one daughter and four grandchildren. David was diagnosed with myofibrillar myopathy and spheroid myopathy. He is a musician, guitar tech, and dog lover. He and his wife currently have two Mastifrenchies ! I was officially diagnosed…

Top 5 Things to Know About MDA’s Efforts to Protect Medicaid

In 2025, MDA’s advocacy team has focused on protecting Medicaid from Congressional budget cuts. We know many in the MDA community have questions about why Medicaid is important, current threats to the program, and how community members can get involved. We sat down with MDA’s Director of Advocacy Engagement, Mark Fisher, to learn the latest.…

Why Multidisciplinary Care for ALS Yields Better Outcomes

Multidisciplinary care for amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases leads to better outcomes.

Clinical Research Alert: Observational Study in Female Carriers of SMA and Their Biological Children

Researchers at Natera are seeking female carriers of spinal muscular atrophy (SMA) and their affected or unaffected biological children for an observational study (DYADS study). This study will collect blood samples and health information from participating pairs (mother and child). Findings from this study could help in development of non-invasive prenatal screening tools for SMA.…

MDA Ambassador Guest Blog: How Genetic Testing Helped Us Feel Empowered

Jessica and Mark Lennox live in Jupiter, Florida with their two sons, four-year-old William, and two-year-old old Paul. Mark is a US Army veteran and works in renewable energy. Jess, originally from Maryland, is a full-time Mom. At 3 months of age, William was diagnosed with spinal muscular atrophy with lower extremity predominance (SMA-LED2). Will…

Quest Podcast: Defending Medicaid with the MDA Advocacy Team

In this Quest Podcast episode, we chat with Joel Cartner, MDA’s Director of Access Policy, and Jori Houck, MDA’s Manager of Advocacy Engagement. They join us to share the most recent updates and information about Medicaid benefits, current legislative efforts and what MDA’s Advocacy Team is doing to protect those efforts, and how you can…

Travelers with Disabilities Share Their Top Tips to Avoid Mishaps

Travel with a disability is unpredictable. Here are tips to plan and prepare for a smoother trip with a wheelchair.

MDA Ambassador Guest Blog: Spreading Awareness One T-shirt at a Time

Dwayne Wilson is 57 years old. He is originally from Southern California and lived in Spokane, WA. for 20 years until moving back home to Irvine, Ca, in 2017. Dwayne was diagnosed with late-onset Pompe disease (LOPD) on Nov 19th, 2018, when he was 50 years old. Dwayne lives with his wife and mother-in law,…

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…

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 52- Defending Medicaid with the MDA Advocacy Team

In this Quest Podcast episode, we chat with Joel Cartner, MDA’s Director of Access Policy, and Jori Houck, MDA’s Manager of Advocacy Engagement. They join us to share the most recent updates and information about Medicaid benefits, current legislative efforts and what MDA’s Advocacy Team is doing to protect those efforts, and how you can…

Episode 51- Finding Joy in the Midst of Change

In this Quest Podcast episode, we chat with MDA Ambassador Jess Westman about embracing individuality and finding joy in our lives as paths and priorities change. The activist, actor, composer, author, and podcaster has devoted his career to providing joy and laughter to others and finds personal fulfillment through his faith and advocacy. Jess joins…

Episode 50- PJ’s Protocol: A Lifesaving Procedure Fueled by Love

In this episode of Quest Podcast, we chat with three pillars of the Duchenne muscular dystrophy community who are here with us on the 10th anniversary of PJ’s protocol. First, we have Brian Nicholoff whose son’s untimely passing was the catalyst for the creation of PJ’s protocol. Next is Amy Aikens whose son’s life was…