Letter from the Editor: How New Higher-Dose Regimen for Spinraza Brings More Hope

Today I write to you with a full heart—because there is news that feels nothing short of miraculous. The FDA has approved a higher‐dose regimen of Spinraza (nusinersen)for people living with spinal muscular atrophy (SMA), and I want to share what this means for me, what I believe this means for our community, and for the…

Simply Stated: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare neurological disorder in which the immune system mistakenly attacks the protective covering of peripheral nerves. This damage disrupts nerve signaling and can lead to muscle weakness, numbness, and problems with balance and coordination. CIDP is estimated to affect between 1 and 9 people per 100,000 individuals. Cause…

Life with Lily: Why an Expert Specialist is Crucial for Your Care

Living with a rare disease means navigating a healthcare system that often feels fragmented and overwhelming. For many of us, finding a doctor who truly understands our condition is essential. A rare disease specialist does more than treat symptoms. They see the complete picture of who you are and what you face. They understand the…

Quest Podcast: 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…

Wildland Fire Fighter Refuses to Allow Diagnosis to Define His Life

When Tyler Long was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) during his senior year of high school, doctors advised him that this diagnosis meant that he should plan his future around a “non-strenuous” lifestyle. For the active and athletic outdoorsman, this suggestion wasn’t in alignment with how he saw himself and how he wanted to…

How to Make Vocational Training Affordable

Vocational training, technical education, or a trade school may be even more affordable than you think with these resources and support.

MDA Ambassador Guest Blog: Navigating a Busy Life with a Feeding Tube

Richard Farrell Jr. is 19 years old and lives in Pennsylvania. He was diagnosed with Becker muscular dystrophy (BMD) when he was 5 years old. He loves to repair computers, play musical instruments, play video games, and talk with his friends. Living with a disability has required me and my parents to rise to meet…

2026 MDA Clinical & Scientific Conference Opening Highlights the Power of Collaboration

People from across the neuromuscular field gather to learn and collaborate at the 2026 MDA Clinical & Scientific Conference.

Clinical Study Alert: Phase 1 Study of MyoPAXon in Boys with DMD

Researchers at the University of Minnesota are seeking boys with Duchenne muscular dystrophy (DMD) to participate in a phase 1 clinical trial to evaluate the safety and efficacy of the investigational cell-based therapy MyoPAXon in combination with the immunosuppressant therapy tacrolimus. The current study is examining whether this investigational treatment is safe and well-tolerated in people…

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 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…

Episode 60- Fashion for Every Body: Izzy Camilleri on Style, Function, and Inclusion

In this Quest Podcast episode, we chat with internationally recognized fashion designer Izzy Camilleri, a true pioneer in adaptive fashion. She shares how her successful career in high-end fashion took a transformative turn when she began designing clothing for people with disabilities and partnered with Silverts—work that helped ignite today’s adaptive fashion movement. Izzy shares…

Episode 59 – Redesigning the Day: Accessibility and Mindset Life Hacks with Jax Cowles

In this Quest Podcast episode, we chat with public speaker, consultant, and disability advocate, Jax Cowles. Jax shares an honest, thoughtful, and deeply creative conversation about daily life, independence, and problem-solving.  She opens up about how creativity and “life hacking” became essential tools rather than optional skills, and how small, low-cost adaptations can completely transform…