Quest Podcast: The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up

In this episode of the Quest Podcast, we chat with Nicole Lucas, a devoted family caregiver and dental hygienist who stepped away from her career so that her daughter could pursue her dreams; Carly Weber, a 24-year-old law student at the University of Pittsburgh living with spinal muscular atrophy (SMA) who has never let expectations…

Critical ALS Legislation You Need to Know About

As we near the end of ALS Awareness Month, the work is just beginning to get critical legislation for those with ALS passed by Congress. This year, MDA is prioritizing and advocating for three major ALS congressional initiatives in service of those living with ALS. First, we need to ensure ALS research and care programs…

MDA Ambassador Guest Blog: How to Find Community for Young People Living with Debilitating Diseases

Since her diagnosis with ALS at age 32, Gwen Petersen has poured her energy into advancing the science of her disease through participation in clinical and observational research. Gwen works together with her beloved group, Her ALS Story, to raise awareness that young people can get ALS, too. Gwen is married to her best friend,…

Clinical Research Alert: Natural History Study in Individuals with Myotonic Dystrophy Type 2

Researchers at the University of Rochester are seeking adults with myotonic dystrophy type 2 (DM2) for a longitudinal natural history study (LEOPARD-DM2: Longitudinal Endpoint Optimization Providing an Assessment of Relevant Drugs in Myotonic Dystrophy Type 2). This study will collect health information through period assessments over 2.5 years. Findings from this study could help researchers better…

MDA Ambassador Guest Blog: Embers of Resilience Through Depression

Joshua Vinson enjoys rain, camping, and cooking. Joshua works as a Quality Assurance Specialist in medical records processing. Their NMD diagnosis is Laing Distal Muscular Myopathy.  I think about fire a lot. I see the campfires I used to sit around before I grew too weak for weekend camping trips. I reminisce about the large…

When “No Options” Starts to Change: A New Chapter for Seronegative Myasthenia Gravis

For many people living with generalized myasthenia gravis (gMG), the journey is not just defined by symptoms—it’s shaped by uncertainty. Uncertainty in diagnosis. Uncertainty in treatment. And for a significant subset of the community, uncertainty in whether therapies designed for others will work for them at all. That’s why moments like this matter. The recent…

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…

The Joy (and Lessons) of Motherhood from MDA Ambassadors

Motherhood is an incredible journey, layered with joy, growth, challenges, victories, and an abundance of love. For moms living with neuromuscular disease, the role of motherhood can sometimes entail additional layers, requiring extra patience, adaptability, and resilience. But, with a beautiful harmony, those very traits are often strengthened through daily life with a disability and…

MDA Ambassador Guest Blog: ALS is Not the End of My Story

Monica Torres is a 42-year-old mom of 6. Monica was born and raised in Puerto Rico and recently moved to the city of New York. She has a service dog name Cloe. Being diagnosed with ALS is a moment that will forever stay with me. It felt as though time paused, and in that silence,…

Clinical Research Alert: Phase 3 Study of Pridopidine in Individuals with ALS

Researchers at participating clinical research sites are seeking individuals with amyotrophic lateral sclerosis (ALS) for a phase 3 study (PREVAiLS). This study will evaluate the safety and efficacy of the investigational drug pridopidine to treat ALS. Pridopidine, which is being developed by Prilenia Therapeutics and Ferrer, has shown neuroprotective effects in multiple preclinical studies, as…

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 63- The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up

In this episode of the Quest Podcast, we chat with Nicole Lucas, a devoted family caregiver and dental hygienist who stepped away from her career so that her daughter could pursue her dreams; Carly Weber, a 24-year-old law student at the University of Pittsburgh living with spinal muscular atrophy (SMA) who has never let expectations…

Episode 62- From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability

In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary documentary The Ride Ahead. In the film, Samuel opens up about his personal journey into adulthood — navigating housing, employment, relationships, and higher education while…

Episode 61- Pizazz, Purpose, and Periodic Paralysis: How Cienna Ditri Turns Lived Experience into Advocacy

In this Quest Podcast episode, we chat with advocate, social media influencer, and President of the Periodic Paralysis Association (PPA), Cienna Ditri, who lives with periodic paralysis. Cienna shares her diagnostic journey — from childhood soccer games where something felt “off” to finally getting answers — and how living with an unpredictable condition has shaped…