I participate in a lot of benefits but none is more meaningful to me than the RideATAXIA.
My old boss’s nephew was stricken with Friedreich’s ataxia (FA) at age 9. Initially it presented as a loss of coordination earning him the nickname “Stumbles” at school. No one realized that he had a disease. Unfortunately, it’s a progressive disease and now Riley uses a wheelchair most of the time.
When Pat asked me to participate 5 years ago, I never thought that I would be so touched by people coming together for a cause. RideATAXIA was initiated by Kyle Bryant in 2007. Diagnosed with FA, Kyle found that he could still ride a recumbent bicycle so he centered an awareness and fund-raising campaign around multiple cycling events around the country. There are so few people diagnosed with the disease that there was little support for research or finding a cure. This adversity has brought the families of those afflicted with FA together. It makes this event very personal.
With Team Riley printed on the shirts, I often heard, “I know Riley.” In fact everyone seemed to know everyone and, as I learned, everyone at the event knows someone with FA. They are volunteering at the event because a brother or sister, son or daughter has the disease. They know one another because they need the social support as their child struggles to get through each day. Their conversations center around what research is being done and how do you participate in a clinical trial. They share their hope that there will be a breakthrough someday.
The ride this year centered around the town of Winters. It’s a sleepy little farming town on the west side of the Central Valley that I knew nothing about until I started doing this ride. In years past, the rest stop was in the main square so I have been here year after year but never had the opportunity to explore. This year, the ride started and finished in Winters and it was only Pat and I riding from the usual work group. Riding through the orchards and farms that surround Winters, it was fun to have 3 uninterrupted hours to talk. I promoted, he retired; he lives north, I live south; it was an opportunity to catch up without distractions.
Each year there is new research being done, new medications going to trial, and new hope. But, until there is a cure, I hope to keep doing this ride.