WE DID IT!
November 07, 2016
Hi everyone, on November 6th, 2016 I will be running the TCS New York City Marathon on behalf of my friend Annie Hamilton.
Three years ago when Annie was nine, her life changed forever as she was diagnosed with an usually rare disease called Friedreich's Ataxia. Friedreich's Ataxia (FA) is degenerative neuromuscular disease. Its effects are devastating. Initially impacting balance and coordination, the disease then leads to long term medical conditions; scoliosis, diabetes, vision and hearing loss, as well as serious heart conditions. Like Annie patients are generally diagnosed between the ages of 5 and 15. While FA progresses at a different pace for each individual, most require a wheelchair ten years after diagnosis and face an extremely shorted life expectancy. Annie is one of 15,000 people living with this condition worldwide.
Since her diagnosis Annie's parents Tom and Karen Hamilton have started The CureFA Foundation to advance and support FA research. Unlike most other debilitating diseases, FA is a single gene defect and that gene has been identified. Researchers rarely use the word "cure" when studying a rare disease with no approved therapies, but with FA that word is now a part of the lexicon. With the many clinical trials and cutting edge therapies currently in place, we feel the time is now to make a significant investment in advancing FA research. At this critical juncture. we know we can chance the course of Friedreich's Ataxia, which is why I am asking for your support now. A cure is in reach.
On behalf of Annie and the many thousands of children and families living with FA, we extend our deepest thoughts.
Please donate to help CureFA! Thank you.
For more information about Annie and FA visit CUREFAFOUNDATION.ORG