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It is that time of year again, as we start our fundraising efforts with rideATAXIA to raise money for Friedreich's Ataxia research. We have participated in several rideATAXIA events and this year's will be unique. Instead of riding in person with our family and other FA FAmilies in Chicago, we will be participating in a virtual fundraiser. We will be logging miles we ride back home through June and July. This year, Scarlett will be joining me on many of the rides in her specially equipped Catrike recumbent trike.
While we know this has been a challenging year for all, we hope that you can show support for this great cause by donating to my rider page. We appreciate everyone’s support and contributions through the years, and we look to continue this momentum in 2020. Your support has help research continue towards finding a treatment and a cure for this rare disease. This year we expect to have the first FDA approved treatment for FA with Reata's Omaveloxolone. We hope to learn more about potential gene therapy trials focused on FA to start in the near future. Without your support this progress would not be possible.
Follow me on Facebook and Instagram as we share our rides and maybe we will see you on some of our rides.
For more about FA and how it has affected our Family:
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 three years we have noticed Scarlett and Lilah become more imbalanced, experience an increased frequency of falls, and they have been transitioning to walkers to help assist them in getting around.
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.
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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