Read Nygel's Story

"What more can I do—for myself and the ultimate goal of treatments and a cure for Friedreich's Ataxia?"

When I was growing up, I was a fairly typical, active boy. I played sports like football, soccer, basketball and baseball. I also loved my bike and skateboard, especially building crazy ramps and jumping them or doing tricks. Basically, I was outside doing some sort of activity whenever I had an opportunity. I continued after being diagnosed with scoliosis when I was 11. However, my life changed when I had surgery for my scoliosis at age 15. My balance worsened immediately, so I began seeing a neurologist. It took almost four years to confirm that I have Friedreich's Ataxia (which was in 1994, when I was 19).

Fortunately, I also did well in school and was in college when I was finally diagnosed. I completed undergraduate school and then received a master's degree. I was not going to allow FA to defeat me. However, I must admit that I did not completely accept FA or confront what the diagnosis meant (e.g., eventually using a wheelchair full time, not expecting to live as long as the average person). It is daunting. I used a cane for a couple of years, a walker for a couple of years, and I finally began relying upon a wheelchair after graduate school (in 2001).

I had to stop driving. I could not find a job. I finally decided to research this disease that I had kept in the back of my mind but in plain sight. I joined a National Ataxia Foundation support group, began leading it in 2002 and became quite involved with the NAF. My group was honored to host the 2005 NAF Annual Membership Meeting in Tampa, Florida. That was a wonderful experience for the ataxia community, but it was also quite empowering on a personal level. I had a lot of responsibilities in terms of leading fund raisers, seeking guest speakers, finding a hotel, speaking, etc. This is only one example of something I never would have done if I did not have FA.

Leading my local support group was extremely rewarding. I love meeting people with ataxia and helping as best I am able. I sometimes even have good advice! People with ataxia are awesome and have the best senses of humor. The support group also boosted my confidence and lead to me finding a job. I have been working as an assessor at the Pinellas Juvenile Assessment Center since 2004. Basically, the job entails interviewing teenagers and determining their counseling needs.

I stay pretty busy working and am considering my next move. I love to spend time with friends, joking, playing games, writing and traveling. I stay in decent shape, but I need to become more proactive. In fact, maintaining a friendship with Kyle and seeing what Ride Ataxia has become—and where it is going—is amazing! One cannot help but look at this accomplishment and think "what more can I do—for myself and the ultimate goal of treatments and a cure for Friedreich's Ataxia?"

It is apparent to me that Kyle and Ride Ataxia are not only raising money and awareness for FA, they are also encouraging more and more ataxians to cycle, handcycle, ski, do yoga and/or any activity to maintain and strengthen themselves—and have fun! I have done and will again do physical therapy, I have tried wheelchair rugby (which I recommend trying, but it is not easy). However, I am not the best example for physical fitness. We are all different and at different stages. I do not want to speak for Kyle, but I believe that he wants every individual with ataxia to do what he/she can for him/herself and for ataxia. We all have various talents and skills. Use them for your health, happiness and to fight ataxia.