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Villa Park resident with genetic disorder rides to raise money, awareness

Published: Monday, July 29, 2013 12:07 p.m. CDT • Updated: Friday, July 25, 2014 4:47 a.m. CDT

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VILLA PARK – Throughout the winter months, Nicole Kramer was looking for someone to go bike riding with her.

Despite the cold temperatures, she kept an eye out for any and every mild day when she could get out on her new bike.

Kramer, 19, of Villa Park, was eager to ride, because the bike, a Catrike recumbent trike, was awarded to her in mid-November, thanks to a grant from the Ataxian Athlete Initiative. Through this program, seven specially designed bikes were given to people throughout the United States and Canada with Friedreich’s Ataxia.

“I was really excited, but it did stink a lot getting (the bike) in the middle of November,” Kramer said.

Friedreich’s Ataxia is a debilitating genetic disorder that is characterized by a loss of coordination, curvature of the spine and a heart condition called hypertrophic cardiomyopathy; other symptoms often are present in people with the condition. Kramer was diagnosed when she was a sophomore at Willowbrook High School.

This weekend, Kramer will join her friends and family to participate in the second annual Ride Ataxia biking event in Channahon, Ill. The event offers four-, 12-, 32- and 52-mile bike rides, and proceeds from the event benefit the Friedreich’s Ataxia Research Alliance.

“Last year, I just volunteered because I didn’t have a bike,” she said. “This year, I got the Ataxian Athlete grant to get a bike.”

There never was any question in her mind whether she would bike this year, she said. The biggest debate was if she would do the 12- or 32-mile ride. Kramer settled on 12 miles so she would be back in time for the lunch provided by Outback Steakhouse, Bonefish Grill and Carrabba’s Italian Grill.

Ride Ataxia’s inaugural event in the Chicago area was last year. The ride drew 230 participants and raised more than $60,000, said Kelly Kramer, Nicole Kramer’s mother.

“It was unbelievable to see the amount of support,” Nicole Kramer said. “You know the community’s big, but it’s different when you’re actually there and see it.”

During Ride Ataxia in 2012, Nicole Kramer tried a few recumbent bikes on display from a vendor and then decided to apply for the grant herself.

The application was extensive, her mother said, and required the applicant to research the type of bike he or she wanted. Nicole Kramer also needed to write about how she planned to use the bike and how it would be beneficial.

She chose the Cartrike brand, which rides on three wheels and “really flies,” she said.

“It’s great because it’s given her so much independence,” Kelly Kramer said.

This year’s ride is Sunday, and Cole’s Crew, the fundraising team backing Nicole Kramer – whose mother calls her Cole – has recruited 21 members and raised $3,735 as of Wednesday. They have set a goal of $5,000 before the weekend is over.

Kramer’s older brother, Alex, is doing the 52-mile ride this year with a group of friends, as are an assortment of relatives, friends and people who joined after hearing her story.

In 2012, Nicole Kramer became the first recipient of the Willowbrook High School Warrior Award, which is given annually to a member of the school’s community who has shown strength when faced with personal struggles. After the award was given, Raphael Garcia, a classmate who she knew casually, approached her to get involved in Ride Ataxia. This year, he’s recruited his father and sister to ride, too.

“I’m excited to see everyone,” Nicole Kramer said. “I’m excited to see Raphael and his family. Some of my other friends are doing it this year. Last year, I waited too long to ask them, and many of them were busy.”

In addition to riding her bike and helping organize Ride Ataxia, Kramer is working in the financial aid office at College of DuPage, taking an online summer class and getting practice with a different set of wheels. She’s taking driving classes this summer at Marianjoy Rehabilitation Hospital in Wheaton and learning to control the car’s speed with hand controls. Depending on how things go, she might get her driver’s license by the end of the summer.

Despite the new freedoms that come with driving, Kramer still is thankful for her bike.

“It’s just the freedom of going anywhere when I want to do it, instead of always asking people to take me places,” she said.

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