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Dylan (10 years old) and Sienna (6 years old), close family friends of ours, were diagnosed with Friedreichs Ataxia (FA), a debilitating, life-shortening, degenerative neuro-muscular disorder. FA is the progressive loss of coordination and muscle strength that leads to motor incapacitation and the full time use of a wheelchair. Other symptoms include a serious heart condition (hypertrophic cardiomyopathy), diabetes mellitus, aggressive scoliosis, vision impairment, hearing loss and slurred speech. Although cognitive function is not affected at all.
There are several promising therapeutic agents in development that will hopefully slow down or even stop the progression of the disease.
On August 4th 2012, my sister and I are putting on a Kids Triathlon to help raise money for this cause and to get kids involved in staying active. We hope to run this event for many years to come and could think of no better way to serve the children in the community while helping a wonderful organization in finding a cure for FA.
The mission of the WildFire Kids Tri is to raise money for FARA as well as get the youth in our community involved in being active.
Your support or donation to WildFire Tri would be greatly appreciated. If you would like more information or to make a donation, please contact [email protected] .-
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