Community Members Reflect on MDA’s Impact

From our earliest days, MDA’s mission has been centered on ensuring that individuals and families living with neuromuscular diseases have the resources, care, and support they need to live stronger and more independently. Our community’s resilience and strength have propelled us to continually improve and find new ways to offer hope, connection, and community.

We asked community members what comes to mind when they think of MDA and what they hope to see in the future. Here’s what they have to say.

Why MDA Is Top of Mind

“I think of MDA’s wonderful events, giving me a chance to connect with other families. Knowing you are not alone in your diagnosis is huge for me, especially since I was diagnosed in my early twenties.”

— Emily lives with late-onset Tay-Sachs disease in St. Louis, Missouri

“I remember taking my son Benjamin to the Fill the Boot events in our area, and having him out there helping with the cause was an amazing feeling.”

— Valerie has a son living with Duchenne muscular dystrophy (DMD) in Farmville, North Carolina

 “When I think of MDA, the first thing that comes to mind is a strong community. It is an organization that promotes people supporting people. It is a place for people who live with rare diseases to find ‘their people.’ People who understand exactly what they are going through and can understand each other on a level that can be hard to find in our everyday lives.”

— Amy lives with Bethlem myopathy in Noblesville, Indiana

“MDA is an incredible resource that helps you with answers to questions you didn’t even know to ask.

— John lives with amyotrophic lateral sclerosis (ALS) in Seabrook, Texas

Why I’m Involved

“MDA completely transformed my life as a small child, and its impact continues to this day. It was through MDA that I finally received my diagnosis and accessed state-of-the-art care. Beyond the medical support, MDA helped me learn, both mentally and socially, how to live with my new reality after diagnosis. It’s also where I began my journey in fundraising, advocacy, and connecting with other patients and families. MDA has truly been there for me through every stage and every need.”

— Lily lives with Charcot-Marie-Tooth disease (CMT) in Charlotte, North Carolina

“To be able to do things inclusively and be proactive! Summer Camp, Fill the Boot, Shamrock pin ups — I look forward as an MDA Ambassador to being at these events and helping others learn, as I also learn, about muscular dystrophy.”

— Dakota lives with myotonic dystrophy (DM) in Waterbury, Connecticut

“Since getting involved with MDA, I’ve seen advancements that either didn’t exist or I didn’t have access to when I was a kid. I believe one very important thing that still needs to be worked on is bringing awareness.”

— Rodrigo lives with congenital muscular dystrophy (CMD) in Dallas, Texas

Looking to the Future

“We are now seeing the realization of our long-held hopes for muscular dystrophy treatment options. There are numerous treatments available for various forms of this condition. My hope and desire is that just around the corner, we will arrive at the day when there will be treatments for all conditions, allowing everyone in the MDA community to live their best lives.”

— Ira lives with spinal muscular atrophy (SMA) in West Palm Beach, Florida

“ From when I was born to now, the field of neuromuscular disease has progressed so much through MDA’s support … This brings me hope that I will see change in my lifetime.”

— Justin lives with LAMA2 CMD in Concord, Massachusetts

“ I hope and pray that neuromuscular disease continues to be better understood and that effective treatments, preventions, and cures are found that are reasonably priced and readily accessible to those impacted by neuromuscular diseases.”

— Michael lives with limb-girdle muscular dystrophy (LGMD) in Chatham, New Jersey