Over the next few days, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. Today, meet Reagan:
Hi, I’m Reagan and I have LGMD2A/R1. I was nine years old when I was diagnosed. When I was younger, I was a toe-walker, and I had to have two surgeries — one at age 10 and another at 11 — to lengthen my Achilles tendons. These surgeries helped, but LGMD still affects my daily strength and balance.
Because of my condition, there are things I used to love doing that I can’t do anymore, like ballet. I also struggle with tasks that require upper-body strength, like combing my own hair. Those moments can be frustrating, but I try to focus on the things that bring me joy. I love theater and performance, reading, and language — anything that lets me express myself creatively.
A cure would mean being able to keep my strength and independence in the future. It would mean not having to worry about losing abilities as I get older, and knowing that nobody would need to take care of me. Being able to rely on my own body would change everything.