MDA Ambassador Guest Blog: Helpful Tips for Accessible Halloween Costumes

Megan Jennings, known professionally as Sybil Thorn, is an artist and freelance creator. Born with spinal muscular atrophy, she received her bachelor’s degree in Theater and English with an emphasis in Creative Writing from Presbyterian College, where one of her favorite classes was in costume design. As a lifelong costumer, she looks forward to Halloween…

Simply Stated: Updates in Facioscapulohumeral muscular dystrophy (FSHD)

Facioscapulohumeral muscular dystrophy (FSHD) is a genetic disorder that may affect all muscles across the lifespan of an individual. While FSHD has historically been detected in muscles in the face (facio), shoulders (scapulo), and upper arms (humeral), new data derived from AI analysis of whole-body MRI scans challenges the historical view that FSHD is limited…

Izzy Camilleri Merges High Fashion and Adaptive Clothing Design

Fashion icon Izzy Camilleri bridges high fashion and accessibility, designing stylish adaptive clothing for people who use wheelchairs.

MDA Ambassador Guest Blog: Life Lessons on My Journey with Becker Muscular Dystrophy

Jon Bruns is 56 years old.  He is originally from South Dakota and now lives in Ham Lake, Minnesota.  Jon was diagnosed with Beckers muscular dystrophy (BMD) in his early 20’s.  He and his wife of over 22 years have one daughter, who is a college student.  Jon is an accountant and finance professional and…

MDA Summer Camp Alumni Put the Power in Powerhockey

On the weekend of August 1, five Powerhockey teams from across North America hit the arena to compete for victory in the 2025 Powerhockey Cup. Hosted by the Philadelphia Flyers PowerPlay at Neumann University in Aston, PA, the tournament was a dazzling display of strength, abilities, and heart. Powerhockey, whose rules are based on a…

Quest Podcast: 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…

Insights by Ira: From Telethons to Treatments – Decades of Impact

When I think of Labor Day Weekend every September, it truly invokes so many emotions and memories for me! As a 90’s kid from the mid-west, the holiday meant it was the official start to another school year.  It meant that summer was over, and fall was upon us. But growing up, for me and…

MDA Ambassador Guest Blog: Better All the Time: Fighting Against Bitterness

Chase Rankin was diagnosed with Friedreich’s ataxia in the 7th grade. He is now a graduate from the University of North Carolina at Charlotte, with dreams of becoming an author. Forgive me for stating the obvious: Neuromuscular disease is no fun. It is terrifying, frustrating, deeply saddening, and has countless other negative attributes that combine…

MDA Ambassador Guest Blog: The Unequivocal Power of Using Your Voice

Living in Pennsylvania with her son, Victoria is an active volunteer with the Speak Foundation and LGMD News magazine as an Assistant Editor. She educates occupational and physical therapists, along with medical students, about her disease and inequities faced in healthcare today. Everyone finds their voice at different times in their life and, for me,…

Guest Ambassador Blog: What #MDAstrong Means to Me

Saida Mahoney is a college student from Oakland, CA, where she is majoring in performing arts. She is a dedicated advocate and activist for people living with disabilities. Saida enjoys traveling and giving back to others through community service. She lives with congenital muscular dystrophy, which has affected her ability to participate fully in school…

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 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…

Episode 54- Service Dogs, Inc. – Paws with a Purpose

In this Quest Podcast episode, we chat with a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. Under her guidance, Service Dogs, Inc. has led the industry in combining…