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Friends using today's Tour de Palm Springs as platform to fight rare neurological disorder

1.0 from 6 votes
Monday, February 11, 2013

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Stephanie Magness was diagnosed with Friedreich's Ataxia, a rare neurological disorder, eight years ago.

She didn't know anything about the disease, and the diagnosis came after a decade of being misdiagnosed. Still, there wasn't much in the form of fundraisers or charity events or information.

The Magness family was ready to help tackle this disorder, and once Stephanie was on board, they began to look for ways to help find a cure.

It starts with a bike.

Magness' brother Keith will ride in the Tour de Palm Springs today - he completed 100 miles last year - in an event that's geared toward helping nonprofit organizations. The event brings thousands of people and bikes and causes together.

"It's so much fun, but it was really hard for me to step out of my comfort zone with that, and at first I was kind of against it," Stephanie Magness said. "But you open yourself up and let people know what's going on, and it's such an honor to raise money for it. Hopefully, one day, generations after us won't have to worry about FA."

Magness, 31, will spend her time volunteering at an informational booth and cheering on her partners. Her friend in the fight to find a cure, Beth Bax, is a teammate on the 25-person Team FARA (Friedreich's Ataxia Research Alliance). They met through the bike ride.

Together, they are wonderful, courageous ambassadors for the cause.

"She's the beauty queen," Bax said as she and Magness sat side-by-side in their wheelchairs at the Magness home the other day.

Magness - a Saugus High graduate - is sweet, charming, positive and finds a silver lining for everything, even the disorder that tragically becomes progressively worse.

"It's inevitable you're going to get worse, but if you work at it, you hope you can make the progression slower instead of sitting back and letting it take over," Magness said.

Bax, of Altadena, is intelligent, insightful and comical. She so happily describes last year's windy ride - and she was in the recumbent bike that's low to the ground - as a spa-service facial because she was pelted with dirt and rocks.

She's the comical one who knows much about the disease and found a way to cope despite learning of her diagnosis as a newlywed. She and her husband, Eric, have two children - 11-year-old Natalie, who will ride with her mom, and 8-year-old Charlotte - and a host of family members who will help.

"I didn't know anyone who had FA," Bax said. "It's so rare. You don't go up to everyone you see in a wheelchair and say, `What do you have?'

"It's amazing and incredible to see someone going through the same problems and being accepted. The whole FA network has done a lot."

Bax teared up while talking about finding acceptance and camaraderie with people who share the same successes and struggles. But she also uses humor to help.

Magness and her family and friends participate in a fundraiser in Santa Clarita in November - Stephanie's Hope Holiday Boutique - where vendors sell clothes, jewelry and such, with profits going toward FARA. Last year, the event raised $10,200.

"You never know (about a cure)," Magness said. "It could be any time. We feel we're so close. I feel that with every pedal, you get closer and closer. The people that are there to support you have the same goal as you - to cure this thing."

Author: By Jill Painter
Source: Daily Breeze
1.0 from 6 votes
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