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Five years ago my niece, Annie, was diagnosed with an unusually rare disease called Friedreich’s Ataxia. This October 15th I will be particiapating in a bike ride called rideATAXIA to help find a cure. Friedreich’s Ataxia (FA) is a 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 shortened life expectancy. Annie is one of 15,000 people living with this debilitating condition worldwide.
We are fortunate that, 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 change the course of Friedrich’s Ataxia, which is why we are asking for your support now. A cure is within our reach.
Please join me on this ride and help us raise funds and awareness so that we can eradicate this disease!
On behalf of Annie, my entire family, and the thousands of others living with FA I sincerely thank you for your consideration.
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