Archives
Remembering Brooke Eby: A Friend Who Taught Us to Laugh, Connect, and Live Fully
A personal remembrance of a friend, advocate, fundraiser, community builder, and unforgettable force for the ALS community. There are some people you meet who are simply impossible not to like.…
For Frightful Fun, Book a Stay at an Accessible Haunted Hotel
Five historic hotels combine ghost stories with verified accessibility features for travelers with disabilities. Here’s what to know before booking a stay.
Tags: Featured Content, Travel
Simply Stated: Updates in Paramyotonia Congenita
Paramyotonia congenita (also known as Von Eulenberg disease) is a rare inherited disorder that causes episodes of muscle weakness, stiffness, or paralysis (inability to move). These episodes typically affect the…
Tags: Simply Stated
Every Collegiate™ Apparel Brings Inclusion to Campus
Mo Gerhardt at a Michigan State University football game. Mo Gerhardt is changing the game when it comes to accessible and inclusive fashion. The 48-year-old retired Michigan State University (MSU)…
MDA Ambassador Guest Blog: A Different Kind of Adventure – The Ups & Downs of Living with LGMD
William Quickel lives in East Tennessee. He was diagnosed with a rare form of limb-girdle muscular dystrophy (LGMD) in 2021, when he was 27 years old. He has shared his…
Tags: Ambassador Guest Blog, Ambassadors
Quest Podcast: More CMT Clinical Trials Than Ever Before: Inside the Research Turning Point
In this episode of Quest Podcast, we chat with Sue Bruhn, PhD, CEO of the Charcot-Marie-Tooth Association (CMTA); Stephan Züchner, MD, PhD, Chief Genomics Officer at the University of Miami…
Tags: Clinical Trials, Community, Drug Approval, Gene Therapy, Healthcare, Innovation, Research, Research Advances, Resources
Newborn Screening & Early Access to Treatment: The Rogers Family SMA Story
SMA testing was added to the federal Recommended Uniform Screening Panel (RUSP) in July 2018, but was not adopted in all 50 states until 2024. Newborn screening plays a pivotal…
Tags: Healthcare, Newborn Screening, Parenting
Life with Lily: Preparing for College with a Neuromuscular Disease
As I prepared for college after graduating high school, my experience mirrored that of many young adults in several ways. Like my peers, I searched for a welcoming campus culture,…
Tags: Ambassador Guest Blog, Ambassadors, College, College Experience, Community, Life with Lily, Lily, Mental Health, Relationships, Young Adults
FDA Approves First Muscle-Targeted Therapy for SMA: A Conversation with Dr. Se-Jin Lee
The FDA has approved Isembyld (apitegromab-mstn), the first therapy designed to target muscle health and regeneration in people living with spinal muscular atrophy (SMA). This milestone adds to the progress…
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…