When Ron founded FARA with his wife Raychel in 1998, their son Keith had been diagnosed with Friedreich’s ataxia a year earlier. The couple had entered the familiar vacuum, where families struggled alone with limited facts of the disease and virtually no community. The FA gene had been identified a year earlier, but little information reached the patient community. Ron and Raychel understood how governing bodies accelerate research and the spread of information, so they created FARA, instilling the spirit of collaboration into the core of the organization.
During the months leading up to my ride, Ron had communicated with Mike Parent, executive director at NAF. Both knew their organizations were significant to me. The first time I had met someone with FA was at a NAF conference, and FARA’s strong focus on FA while maintaining a culture of collaboration resonated with me.
Both organizations — including NAF’s San Diego chapter president Earl McLaughlin — came to the California starting line to support my ride.
Sandy Lane, one of FARA’s founding board directors, came from Orange County for the event, too. In honor of her daughter Chelsea, she had been involved in some of the first large-scale fundraisers for FARA, walks that raised several hundred thousand dollars. I was honored to have them all there.
I wore my newly printed rideATAXIA jersey, sunglasses, and my helmet as I prepared to depart. Chelsea could not maneuver her wheelchair and she had a hard time speaking so I leaned in close as Sandy pushed her up to me. Even with FA taking control of her body, Chelsea mustered a show of character when she said, “Work it!”
After the final round of photos, I stood in the parking lot next to my trike. The sun peeked over the mountains to the east. I tasted salt on my lips, which blew in from waves churning off the bluffs.
rideATAXIA was a fundraising ride, and I wanted to donate the proceeds in a productive direction, but I couldn’t figure out where to commit the funds.
Ron saw that I had grown silent, and he walked up to me. “NAF and FARA have both been important to my family,” I said. “And I’m going to have to make a decision about the funding from this ride.”
Ron placed his hands on my shoulders and nodded at my trike.
Then he looked me in the eye.
“Kyle,” he said, “that trike right there is going to be a vehicle of change.”
For a moment the chaos dimmed.
His comment mirrored the larger-than-life journey that had begun six months earlier when I committed to the ride. On the outside, I conveyed the picture of grins and smiles and handshakes. On the inside, I felt the weight of the entire FA community on my shoulders.
Though the idea had not taken shape yet, this was the beginning of a collaborative relationship between FARA and NAF and perhaps a model for future collaborations. Ron proposed that we split the proceeds between FARA and NAF, hoping that the two organizations would create a matching grant together. The organizations would examine the idea further, while I journeyed across the United States.
I thought about the hundreds of families in the extended FA community rallying around a singular concept — permission to feel hope. With a debilitating disease, your life expectations grow thin. The concept of a future feels foreign — even uncomfortable — a by-product of the shopping list of dismal symptoms that accompany the disease. But when a collective gathers with a singular focus, you’re allowed to glimpse outside the boundaries.
I had stepped into the FA community without much planning, and now I had become an agent of change, or at least my trike had, which took some of the pressure off. When Ron made his proclamation, he wasn’t throwing around fuzzy abstractions. Change had already begun. People were thinking: If we raise real momentum for research and create national awareness, maybe we can kick this thing. Maybe we can find a cure.
Three minutes later, I rode out of the parking lot.