Over the next few weeks, 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 Courtney:
Hi, I’m Courtney. I’m 28 and I’ve lived with LGMD2A/R1 (Calpainopathy) for 18 years. This disease has been a constant part of my life, shaping my choices, my routines, and the quiet battles I fight every day. But it has also taught me resilience, creativity, and how to keep finding happiness in the middle of all the uncertainty.
One of the most meaningful shifts for me has been embracing my wheelchair more often. It wasn’t an easy step, and there are emotions that come with it that people don’t always see. But once I let myself lean into it, it changed everything. I feel safer, freer, and more me than I have in years. I can stay out longer, be present, and say “yes” to life instead of holding back.
A cure would mean relief from the worry, the pain, and the invisible weight this disease puts on every part of my day. Until then, sharing my story is my way of letting others know they’re not alone. I want to show that even with all of the losses, there is still so much strength and hope to hold onto.