Dec. 1, 2014

During their teenage years, both of our daughters were diagnosed with a rare disease that we would have likely otherwise never known about. My wife and I, being non-symptomatic carriers of a defective gene, had no idea our children were subject to the potential of a life altering disease.

Friedreich’s Ataxia afflicts one in 50,000 people; however, the incidence of being a carrier is much more prevalent at 1 in 100. When we were diagnosed, the reality of “no treatment /no cure” was devastating.

Soon thereafter, our emotions evolved into plans for decisive actions we could take to quickly eradicate this disease and provide our daughters with a “normal” life.

Today, due to the exceptionally generous support and active involvement of many, the promise of a treatment is close to a reality. The Friedreich’s Ataxia Research Alliance (FARA) has become an exemplary organization in the rare disease community and, with its highly collaborative approach, orchestrated a global network of researchers, clinicians, and pharmaceutical partners to focus their efforts of FA research.

Leading researchers in this field have considerable confidence that insights into the FA disease will have application to a much broader mitochondrial disease population – more well-known diseases such as Huntington’s, Parkinson’s, and ALS.

Suzanne and I, certainly our two lovely daughters, along with the entire FA patient and patient family community are deeply indebted to USF Health for their continued leadership efforts in FA research.

There are so many individuals that have stepped up in a big way to fuel this mission. The beauty of these individual contributions has been the clear “lift” in the momentum and urgency of this mission, as a whole. We’re convinced today, 10 years after our diagnosis, that the pieces of the puzzle are close to completion, and that many people struggling with various mitochondrial diseases will have an enhanced quality of life.