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…

A Fire Fighter’s Lasting Impact on the Fight Against ALS: Bob McAlvey’s Life & Legacy

The mission to find treatment for amyotrophic lateral sclerosis (ALS) hits especially close to home for fire fighters, with research revealing that they are twice as likely to develop the disease. For Monty Nye, his commitment to the fight to end ALS is fueled by a deeply personal connection – and provides a meaningful opportunity…

MDA Ambassador Guest Blog: Balancing Gracefully: A Mother’s Day Reflection from Ms. Wheelchair America

Tamara Blackwell is a faith-filled wife, mother, and advocate who empowers women to rise in purpose through God’s Word and personal testimony. As a leader and encourager, she speaks from the heart, calling others to embrace their divine purpose, overcome challenges with faith, and step confidently into the life God has destined for them. I…

Fire Fighters Go the Distance for MDA

Thomas Beers knew from a very young age that he wanted to be a fire fighter. The now 25-year-old Montana native developed an early admiration for the commitment of service that he saw exemplified by his local fire fighters. Fire fighters’ commitment, both to keeping their communities safe and to bolstering the mission and impact…

MDA Ambassador Guest Blog: What I’ve Learned as a Disability and Wellbeing Researcher

Payton Rule is a Clinical Psychology PhD student at Washington University in St. Louis, where her research focuses on wellbeing among individuals with disabilities. She was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of five. In her free time, Payton enjoys playing wheelchair pickleball, spending time with friends and family, and exploring local parks…

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.…

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. 

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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.

See All Episodes

Episode 52- Defending Medicaid with the MDA Advocacy Team

April 17, 2025

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

April 2, 2025

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

March 6, 2025

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…