I am 35 years old. I grew up in Northern California but right now I live in the suburbs of Philadelphia. I work full time on staff at the Friedreich’s Ataxia Research Alliance (FARA), and I travel a lot for my job. When I’m home, I like to get in some miles on the bike trail.
– I first felt the effects of FA when I was playing baseball at age 16. It was becoming harder and harder to keep up with other kids. My throws were going off target and I was unable to run down a fly ball in the outfield. That’s when we started going to dfoctors to try to figure out what was wrong. It took over a year to get a diagnosis because even the doctors were unfamiliar withFriedreich’s ataxia.
– Friedreich’s ataxia results from a repeat in the DNA that prevents the cells from making enough of a protein called Frataxin. Frataxin is needed for energy production in the body. Lack of Frataxin results in balance and coordination difficulties, speech impairment, scoliosis, vision and hearing loss, and life shortening heart disease. For me, the balance and coordination issues have been the most challenging aspect of the disease. I have progressively lost the ability to walk, and I now use a wheelchair full time. I cannot play sports like I did as a kid. However, I found cycling and I am able to focus a lot of time and energy on it. My trike is my favorite place to be. It gives me back the freedom that FA took away.
– At first, I reacted with Denial. I didn’t even talk about FA for 2 years after I was diagnosed because I was scared for the future and unwilling to face the reality. My outlook really turned around for me because of the support of my family and their willingness to do whatever we could to help me and the FA community.
– I was fortunate that my employer was very supportive. I worked as a project engineer on Water and Wastewater projects. My coworkers were the best, and I could not have asked for a better work environment. However, I never felt like I was all that good at my job, and I did not love the work. When I realized that I could help mobilize the FA community for a treatment and a cure, it really lit a fire in me and I realized this is what I wanted to do with my life.
– My first ride was 7 miles. I was so proud of myself. Within 4 months I worked up to a century ride, 100 miles in a day! From then on the sky was the limit. In 2007 I did a 2,500 mile ride from San Diego, CA to Memphis, TN. But my most important race came in 2010 when I put together a 4 man Team to compete in Race Across America. Our team rode 24 hours a day to complete the 3,005 mile race in 8 days, 8 hours, and 14 minutes. We had a film crew with us and there is a documentary about our journey: theataxianmovie.com.
– In France, starting on July 1, 2017 we will ride from Strasbourg to Lyon in 7 days to raise awareness and funds for research. On day 8 we will have a ride that anyone can participate in with multiple route lengths to welcome riders of all abilities. Our goal with these two events is to meet as many FA families from throughout Europe as possible. I have always felt empowered when I meet someone facing the same challenges. There is an unspoken understanding between people with FA who know what it is like to walk or roll in each other’s shoes. We are infinitely stronger together compared to when we are alone.
FA isn’t just my fight. It isn’t just a US or a European effort. It is all of us. We are riding to also draw attention to the launch of a Global FA Patient Registry that allows anyone living with FA to register and receive information about trials for which they might be eligible. We (patient participants) are the key to clinical research success.
For the 7 day ride, we will start in Strasbourg at Dr. Helene Puccio’s lab at the IGBMC where she is helping lead the way to a treatment and a cure for FA with many scientific breakthroughs. We will end in Lyon because there is an active patient community there and we will all push toward the goal together.
– In English Le Peloton de L’Espoir translates to The Peloton of Hope and we all provide hope for each other with the way we face this challenging disease. FA knows no borders, affecting many people in Europe and the USA and many other places around the world. We are all in this together, and I am incredibly proud to ride alongside my friends in France.
Kyle Bryant | rideATAXIA Program Director
Friedreich’s Ataxia Research Alliance (FARA) firstname.lastname@example.org