Clinical Research Opportunity: Phase 3 Study of Cladribine in People with Generalized Myasthenia Gravis (gMG)

Researchers at EMD Serono Research & Development Institute, Inc. are working to better understand generalized myasthenia gravis (gMG) and study effectiveness of a potentially new treatment. The study People who have generalized myasthenia gravis (gMG) may be eligible to participate in a phase 3 clinical trial to evaluate the safety and efficacy of the investigational therapy…

MDA Ambassador Guest Blog: How Finding Community Helped Me Face the Fear of Having My Son Tested for CMT

Kevin Crowley is a 48-year-old father of two, husband to the most beautiful woman in the world, dad of a yellow Labrador Retriever, and a coach of the world’s greatest 5th-6th grade youth football team. He was diagnosed with Charcot-Marie-Tooth disease (CMT)1A in his late 20’s. He lives with depression and PTSD and is also…

MDA Ambassador Guest Blog: My Journey to Gratitude is Paved with Acceptance and Advocacy

I’m John Krepps and I am living with Charcot Marie Tooth disease, also known as CMT. I live in Pittsburgh Pennsylvania. (so yes, I’m a Steelers fan.) I’m married to my beautiful wife, Tracy, father to a beautiful daughter, Rhiannon, and Pap to our granddaughters Sophia and Maddie. Also, fun facts about me: My wife…

Clinical Research Alert: Phase 1 Study of AMX0114 in Adults with ALS

Researchers at Amylyx Pharmaceuticals, Inc. are seeking adults with amyotrophic lateral sclerosis (ALS) to participate in a phase 1 clinical trial (LUMINA) to evaluate the safety and efficacy of the investigational therapy AMX0114 to treat ALS. AMX0114 is designed to reduce the levels of calpain-2, an enzyme linked to the degeneration and death of neurons in…

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…

Exoskeletons Improve Movement for Those with Neuromuscular Diseases

As exoskeleton technology improves, more devices are available for use in physical therapy and as mobility aids for people with neuromuscular diseases.

How Expanded Access and Compassionate Use Broaden Access to Investigational Therapies

Expanded access (compassionate use) helps patients access promising treatments when no other options exist. Learn how this process works.

Books to Add to Your Holiday Shopping List This Year: Spotlight on Community Authors

In August, Quest had the privilege of spotlighting published authors living with neuromuscular disease and sharing their books in celebration of National Read A Book Day. With so many talented and accomplished writers in our community and holiday shopping right around the corner, the second installment of our Spotlight on Community Authors blog series is…

Simply Stated: Updates in Neuropathy Ataxia and Retinitis Pigmentosa (NARP) Syndrome

Neuropathy ataxia and retinitis pigmentosa (NARP) syndrome is a rare, maternally-inherited condition caused by mutations in mitochondrial DNA, affecting the energy-producing structures within cells. The condition typically begins in childhood or early adulthood and presents with a wide range of symptoms. These may include learning difficulties, muscle weakness (particularly around the eyes), uncoordinated movements (ataxia),…

Getting Ready for the 2026 MDA Clinical & Scientific Conference

It’s that time of year when we come together to connect, share, learn—while accelerating progress in neuromuscular (NMD) healthcare and scientific progress. This conference is one of the most meaningful gatherings in the (NMD) community—bringing together clinicians, researchers, industry partners, advocates and individuals living with NMD. The four-day conference promises rich content, networking, and collaboration…

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…