A C3 Champion has pledged to match every dollar raised – up to $15,000 – between now and December 9. This generous Giving Tuesday donation is made in honor of Matt Straface.
Greetings! My name is Matt and it has been nearly a decade since receiving my LGMD2A/R1 diagnosis at the age of 24. The journey has been full of highs and lows. This disease is taking much of my physical strength but I take the lead from Coalition to Cure Calpain 3’s mission to overcome weakness with strength. I support C3 because I am one of many individuals with LGDM2A/R1 who will greatly benefit from finding treatments or a cure for this degenerative muscle disease.
Now at the age of 33, my walks have become shorter, 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 about how many steps it takes to enter a friend’s home, and I constantly rely on elevators to access public transportation and my apartment. It is hard to find the right balance of staying active while preserving my muscles. Knowing when to sit out of activities and when to push myself is a never ending battle with the finish line moving further away from me each year. It is a constant practice of learning to accept that this disease will only get worse unless there is scientific research that can provide intervention.
To cope with this disease emotionally, I have journaled my feelings of grief, found comfort in literature and the disability community, and am constantly trying to focus on the things I can control. Through these struggles, LGMDA2A/R1 has deepened my well of resilience and mental fortitude. This loss forces me to constantly pivot and adapt to my surroundings and my ability. I am adapting my dreams, wishes, and goals to create a revised version of what my life will be.
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 in Chicago. I am taking the good with the bad.
Together with C3, we can make a difference in the lives of those with LGMD… not only for myself but the future generations to come, any way to stop or slow the progression of this disease would be a tremendous victory. LGMD2A/R1 attracts significantly fewer research dollars than other forms of Muscular Dystrophy and your support is needed more than ever.
Thank you for supporting this mission and donating to the cause!