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. First up is Matt, who is the inspiration behind this year’s #GivingTuesday match campaign.
Greetings! My name is Matt and it has been nearly a decade since receiving my LGMD2A/R1 diagnosis at the ages of 24. Now at the age of 33, my legs tire more easily, and I am hyper aware of my surroundings in order to avoid falls. I call ahead to restaurants to ensure accessibility, I inquire how many steps it takes to enter a friend’s home, and I constantly rely on elevators to access public transportation and my apartment.
To cope with this disease emotionally, I have journaled my feelings of grief, found comfort in literature and the disability community, and try to focus on the things I can control. Right now – my life is very full! I work as a Project Manager at a social sector consulting firm, recently earned my Master’s Degree in Business Analytics, and get to spend time with my wonderful community of friends and family.