Students from Arcadia University’s Genetic Counseling master’s program were up before the sun on Oct. 7 to support Philadelphia’s fourth annual Ride Ataxia, a bicycle race to benefit the Friedrich’s Ataxia Research Alliance (FARA), a national, non-profit organization dedicated to curing Friedrich’s ataxia (FA) through research. FA is a debilitating, life-shortening, degenerative neuro-muscular disorder that is usually diagnosed in childhood.
By 6:30 in the morning, 11 students from the graduate program, along with clinical coordinator Lisa Kessler and her husband, Dan, were outfitted in bright yellow “Ride Ataxia” t-shirts for work at the registration tables, directing traffic as the 464 competitors and their teams of supporters arrived on site. Second-year student Allison Davis stood with Ron Bartek, president and co-founder of FARA, at the entrance to the event, directing traffic and greeting each carload with a warm, welcoming smile. Davis was impressed that Bartek knew by name almost every FA family that arrived.
Kyle Bryant, spokesperson for FARA and founder of Ride Ataxia, spoke to the genetic counseling classes in September at Arcadia, accompanied by Felicia DeRosa, the FARA Program Manager. They shared the struggles faced by those with FA, explained the efforts being made to improve awareness and treatment and to find a cure, and inspired many in the Arcadia program to volunteer at the fundraiser.
“Volunteering with FARA was an inspiring experience,” said first-year student Erica Schindewolf. “As genetic counseling students these disorders are close to our hearts, and it was a wonderful way to feel like we could give support in a different capacity. Those who came to participate in the race had so many differing insights into Friedrich’s ataxia, and we as volunteers could take away some powerful messages.”
After the event, DeRosa wrote to the Arcadia volunteers:
Thank you! Thank you! Thank you for spending your early morning with us Sunday. We so appreciate you coming out in numbers in the dark hours and the threatening weather to support our event. It was great to have such thorough coverage in all parking lots and at registration.” She reports that the event raised close to $140,000 for FARA’s mission to treat and cure FA. Nationwide, Ride Ataxia cycling events have generated invaluable awareness of FA and funded over $1 million in FA research grants in just 5 short years.