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On Sunday October 15th I’m riding to cure Friedreich’s ataxia (FA). Last year, my daughter, Eleanor, was confirmed to have FA. FA is a hereditary progressive neuromuscular disease that currently causes her to have gait disturbance and to fatigue easily; her leg movements can be described as spastic and she has no lower limb reflexes. As the disease progresses, it will also affect her arm coordination, ability to speak and cause severe scoliosis – among other complications of the heart, bladder function, vision loss and impaired hearing. She has been working hard with various physical therapies to stay strong and stable until it can be stopped, reversed, treated and cured. With your help, this will happen sooner rather than later.
I’m asking you to help raise funds for the patient advocacy organization called FARA thru this ride Ataxia event. Last year they raised over $1M to help fund research for a cure. They have a 4 star rating on Charity Navigator which means they are good stewards of the funds they receive. They are our lifeline of information and coordination of everything FA related. For more info visit, curefa.org.
rideATAXIA was founded by Kyle Bryant, a young man with FA. Kyle redefined what was possible in his life when he took up recumbent cycling. He says after training for and completing his first century ride, "I can't even walk down the street, but I rode 100 miles in a day. After that the sky was the limit." Since 2007, rideATAXIA has raised over $5 million to fund FA research progress.
There are other events throughout the country if you can't get to Chicago. Feel free to start a "Team Eleanor" group closer to home! If I can, my family and I will join you.
Together we will cure FA!
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