North Texas Daily

Denton rides to cure Friedreich’s Ataxia

Denton rides to cure Friedreich’s Ataxia

Denton rides to cure Friedreich’s Ataxia
April 06
23:59 2015

Linda Kessler / Staff Writer

Reclined on her recumbent tricycle, English junior Emily Penn uses her legs and feet to move, something that she and 1 in 50,000 Americans with Friedreich’s Ataxia struggle with.

But while she’s cycling, FA is far from her thoughts. All that matters is the trike, the route and the ride.

“In their lives, people with FA get a lot of help whether they ask for it or not,” Emily said. “But when I’m on my trike I don’t have FA, I don’t think about it. I just move and it’s an incredible leash of freedom.”

FA is a rare, genetic neuromuscular energy deprivation disease that starts in the toes and works its way up. It’s a physical disability that affects lower and upper extremities, but because it’s in the DNA of those affected, there is not yet a cure.

However, the Friedreich’s Ataxia Research Alliance hopes to change that. Beginning in 2009 with the help of Kyle Bryant, FARA started hosting an annual event called Ride Ataxia which raises awareness and funds for FA research. There are five annual Ride Ataxia events nationwide,  including one in Denton.

On April 12, registered cyclists can ride various routes starting at Apogee Stadium to help support the cause. The 50-mile ride begins at 8 a.m., the 25-mile at 9 a.m. and the six-mile at 10 a.m.

Penn’s mother Alexis is a member of the FARA support group and participates alongside her daughter every year. She said getting involved in Ride Ataxia was the pivotal point for her daughter to say she has FA, but by no means is it going to limit what she can do.

“We take walking for granted,” Alexis said. “People with FA can’t walk, but when they get on a bike, the world is theirs.”

At 17, Bryant was diagnosed with FA. He began cycling on his own to raise money for a cure before partnering with FARA to bring this event to the nationwide level it is today.

“I hope that part of the happiness is from the pride that [Emily] gets from cycling and raising money for FA, knowing that she is taking some control back that this disease took away,” Bryant said.

Bryant said FA has given him the gift of forced urgency. After his diagnosis he had two choices: to let the disease take over, or take back control and action of his life.

“One of the things FA does is take away your ability to walk, so it’s very isolating and debilitating,” Bryant said. “So being able to move on my trike under my own power was incredible and I just fell in love with that feeling.”

Outback Steakhouse is sponsoring the event, grilling shrimp at the rest stops along the 25-mile and 50-mile routes and providing lunch for everyone. People who want to help support the cause but not ride can come to the event for a $10 lunch fee.

Riders can register for the event online at www.ridefa.org until noon on April 10. The Denton ride’s fundraising goal is $150,000 with all of the raised money going to research to find a cure and treatments for FA.

The registration fee varies from $25 to $45 and UNT students and alumni can get a 15 percent discount by using the code UNTCureFA.

In total, Ride Ataxia raised $850,000 last year for FA research, and this year Bryant says they’re gunning for a million. Through the money they’ve raised from this event, FARA has funded several projects from a small clinical trial in Australia to a math model created to study the disease in England.

“This ride is all about empowering the individuals that come out, especially those facing any sort of challenge in their life,” Bryant said. “Ride Ataxia is about chasing those challenges and pushing yourself father than you thought possible.”

Featured Image: Emily Penn sits in a recumbent bicycle. Photo courtesy of Penn

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North Texas Daily

North Texas Daily

The North Texas Daily is the official student newspaper of the University of North Texas, proudly serving UNT and the Denton community since 1916.

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