Coping with Grief After Losing a Loved One to a Neuromuscular Disease

Losing a loved one can be overwhelming. That’s why it’s important to know how to manage the emotions of grief.

MDA Guest Ambassador Blog: Cycling Towards a Cure, One Mile at a Time (Charcot-Marie-Tooth disease)

Lilly F. is a 15-year-old rising junior from New York.  Lilly was diagnosed with CMT1a when she was 4 years old.  With no approved treatments for CMT, Lilly follows a strict regimen of physical therapy to keep in the best shape that she can. She is a true New Yorker who loves pizza, hanging out…

MDA Ambassador Guest Blog: How Assistive Technology Makes Learning More Independent

August Johnson, more commonly known as A.J., was diagnosed with spinal muscular atrophy (SMA) when he was nine months old. He recently graduated from high school and will be attending the University of Southern California to study Computer Engineering and Computer Science. My first day of high school, which took place in the middle of the…

Letters From Leah: Learn to Accept Your Reality

Summer has finally arrived! Schools are out, parks and beaches are in. The majority of us wear a more summer-appropriate style, while others feel the need to cover what makes them unique. It can be difficult for a person living with muscular dystrophy, especially if you wear long leg braces in humid conditions. When I…

MDA Engage Symposiums are Back in Full Swing

MDA Engage Symposiums returned in 2023 offering the neuromuscular disease community an opportunity to connect with one another in person and learn directly from expert clinicians about topics related to their diagnosis and daily living. Over 200 people attended the reestablished Engage Symposiums held in Stanford, CA, Princeton, NJ, and Minneapolis, MN last year. Each…

My Gene Therapy Journey: The Bafus Family

The Bafus family’s YouTube Channel started as a means to provide updates with close friends and family regarding their two sons’ Duchenne muscular dystrophy (DMD)), but it has since evolved into a powerful platform to share their gene therapy journey – offering insight and support to other families.  Bryan and Jada Bafus’s two sons, Mason…

Episode 43- Disrupting the Narrative

In this Quest Podcast episode, we chat with the director, executive producer, and leading character of the movie Good Bad Things: Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advise and hope when it comes to navigating life and Hollywood, and creating a future that is…

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…

Living Independently with a Disability

Tips, tricks, tools, and products from experts and members of the neuromuscular disease community to help you live independently with a disability.

MDA Ambassador Guest Blog: Celebrating and Supporting LGBTQ+

Rigo is an artist who studied at the Art Institute of Dallas. Although he has dealt with many challenges due to living with a neuromuscular disease, he likes to focus on what’s most important to him. He wants his artwork to advocate for people with disabilities and for it to tell others that things are…

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 43- Disrupting the Narrative

In this Quest Podcast episode, we chat with the director, executive producer, and leading character of the movie Good Bad Things: Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advise and hope when it comes to navigating life and Hollywood, and creating a future that is…

Episode 42- Empowering Individuality with Inclusive Style

In this Quest Podcast episode, we chat with the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive…

Episode 41- Courage Kindled: A Hero’s Unbreakable Spirit

In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s Disease, He and…