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In 2017, Carrie and I both received news that our daughters, Scarlett and Lilah, were confirmed to have a rare disease called Friedreich's Ataxia, or FA as we call it in the FA community. At that time, neither of us had ever heard of FA or knew what it was. What we learned is something no parent should ever have to face with their children.
FA is a life shortening, degenerative neurological disease that causes an affected person to slowly lose their sense of perception in their legs and arms affecting their ability to walk. Other symptoms can include speech difficulties, scoliosis, and complications of the heart called cardiomyopathy. In the last two years we have noticed Scarlett and Lilah become more imbalanced, experience an increased frequency of falls, and we are starting to acquiring walkers for our daughters to use as their symptoms progress.
After our diagnosis we did what any parent would do. You research and contact the most knowledgeable people and organizations involved. Two of those organizations are the Friedreich’s Ataxia Research Alliance (FARA) and rideATAXIA.
FARA was formed in 1998 with the goal to Slow, Stop, Reverse, and Cure FA. Today, there is no approved treatment or cure for FA. The people of FARA are working to change that by working with Universities and Pharmaceutical Companies across the globe to help promote research towards finding treatments and a possible cure for FA. Currently FARA has a research pipeline of over a dozen treatments that are in various stages of research.
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 $7 million to fund FA research progress.
Last year we participated in our first rideATAXIA event and had over 25 family members come out to participate in the ride or cheer us on. Participating in this ride was our family’s happiest day since receiving the news of our daughters' diagnosis. We were overwhelmed by the amount of love and support shown from other FA families and our friends and family that participated or donated. We were one of the top fundraising teams in Chicago, and helped to set a site record for the Chicago rideATAXIA event.
On July 21, 2019, we will again be participating in rideATAXIA Chicago. We will ride to raise funds for FARA in the hopes that one day there will be an approved treatment or cure for FA.
Join me in supporting the urgent pace of that research. You can make a donation to my rider page by clicking the “Donate Now” button on my page.
FARA is a 501(c)(3) non-profit organization and has been recognized as a 4 out of 4 star charity by Charity Navigator. All donations are tax deductible and over 96% of all funds raised goes directly towards research.
Thank you and together we will cure FA!
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