“The rides make me feel like we’re part of an incredible team and that we can really make a difference and find a treatment and eventually a cure for FA”
Santa Clara, CA – Determined as ever to forge ahead as a “normal” family, the Rupel family is faced with unique challenges that most families have never even heard of. Bart (age 50) and Brenda (51) have a son, Matt (23) with a rare, neuromuscular, genetic condition called Friedreich’s ataxia (FA). Their daughter Katie (20) is also carrier of the gene.
Matt was diagnosed 10 years ago, when he was just in 8th grade. While other middle-school kids were worrying about fitting in, Matt and his family were beginning an epic battle.
Friedreich’s ataxia (FA) is a genetic, progressive and life-shortening neuromuscular condition, and there is currently no treatment or cure. Symptoms start out as difficulty with balance and coordination, and in a short period of time it progresses into life-altering loss of mobility, energy, speech and hearing. FA also presents serious risk of scoliosis, diabetes and cardiac disease.
At the moment, Matt is in an El Paso, TX hospital. He became ill while visiting family. His mother, Brenda, is with him and is hopeful this will just be a speed bump in the race for a cure.
The Rupel family is preparing for a very special event, called Ride Ataxia NorCal, a cycling fundraiser to support the Friedreich’s Ataxia Research Alliance’s (FARA) mission of finding a cure for FA.
Ride Ataxia is taking place on May 31, 2014 and will offer 5, 17, 40 and 60 mile routes for all abilities on scenic country roads, starting at the Veterans Memorial Center: 203 East 14th Street Davis, CA 95616. For more information about the ride, visit: rideataxia.org/norcal.
“I participate in Ride Ataxia for several reasons,” says father, Bart Rupel. “I decided to join Kyle Bryant, the founder of Ride Ataxia, on his second ride [from Sacramento] to Las Vegas. The camaraderie was incredible and I found out that I could ride my bike 50 miles and go up 5,000 feet and live to do it again the next day. The physical challenge was brutal for me, and yet here was Kyle and Sean both with FA doing it.”
“The next year I helped plan the Portland to Seattle ride with 4 days of rain, hail and wind. I loved it. And I loved that my son, Matt, was able to do most of that ride on his trike and that his two best friends, John and Ryan, were able to ride with us. The rides make me feel like we’re part of an incredible team and that we can really make a difference and find a treatment and eventually a cure for FA,” continues Bart.
Matt has a custom-made trike, a piece of adaptive cycling equipment, that allows him to stay mobile, active and moving. For individuals with FA, being able to move with fluidity and speed through cycling is freeing, enabling and inspiring.
Ride Ataxia NorCal aims to raise $125 thousand dollars for research. “What is unique about FARA is the collaboration between the researchers and the families,” says Bart.“The families raise the funds and the researchers are finding the treatments. The researchers get to know the families and are highly driven to find a treatment, seemingly more so than if it were just professional pride.”
Advice from Bart: “Stay involved. As Kyle says, keep turning the crank. Keep up the fundraising, it will lead to a treatment. It’s what we can do to stop this disease.”