Everyone has a part they can play, a role that is essential to our mutual fight against Friedreich’s Ataxia and other rare conditions. For me, I sometimes wish I was a billionaire philanthropist who could fund entire facilities and programs devoted to finding cures. However, it’s safer just to keep my billions to myself. Someone else can be the philanthropist. Actually, someone else will have to do all the philanthropy because my bank account isn’t eligible. Like I said, “sometimes I wish…”
After I was diagnosed in 2007 and every year since then, I ask myself, “what can I do, what part can I play?” A few years ago I got connected with UCLA and enrolled in the ongoing natural history study efforts. They monitor the disease and its progression overall within my body. This study isn’t designed necessarily to identify a cure. However, I believe it is absolutely crucial to the understanding of the disease which directly contributes to cure-discovering efforts and research. Although the data collected from me may or may not help me specifically, I know that it will help someone down the road and I’m happy to be able to invest myself in that manner.
I can do more though, and I want to do more. Several months back I learned about a new clinical trial and I was immediately interested. Sure, there is always some apprehension when talking about a brand new drug that hasn’t been tested in humans yet, but I haven’t felt that the risks were that high compared to the risk of having FA. You are probably aware of some of the symptoms and ultimate prognosis when it comes to living with FA; how much worse can it get? For me, I consider the role I can play and the effect this may have on the bigger picture as a way of managing and contributing to the risk of living with the disease. If I can’t give billions, what can I give?