Fundraising ride hits close to home for teens
By Denise Baran-Unland For The Herald-News July 18, 2012 1:18PM
Nicole Kramer (right), 18 of Villa Park poseswith her brother Alex Kramer and her mother Kelly Kramer. All three will participate in Ride Ataxia on Sunday, July 22, 2012, at Channahon Central Park.
How to help
What: Ride Ataxia
When: Sunday. Registration from 6:30-10 a.m.; 52-mile ride at 8 a.m.; 32-mile ride at 8:30 a.m.; 12-mile ride at 9:30 a.m.; 4-mile ride at 10 a.m.
Where: Channahon Central Park, 24856 W. Eames St.
Preregistration: 4:30-6:30 p.m. Saturday at Outback Steakhouse, 3241 Chicagoland Circle, Joliet
Fees: Online cost is $40 for all rides except the four-mile ride, which is $35. Add $5 a ride for same-day registration.
Contact and/or register online: www.rideataxia.org/chicago
Updated: August 20, 2012 11:16AM
Two Chicago area teens are battling a rare neurological disorder with high academic achievement, positive outlooks, fundraising and bicycles.
On Sunday, both Emily Young, 16, of Saybrook, and Nicole Kramer, 18, of Villa Park will be volunteering at Ride Ataxia, a cycling event that will begin at Channahon Central Park to raise research funds and awareness for Friedreich’s Ataxia.
“It is something that you hear about from other people and pray you will never experience firsthand,” said Emily’s mother, Becky Young. “When Emily was diagnosed we decided to become educated and active. We told Emily she had an opportunity to change the world by just being who she is.”
Ataxia, a debilitating, life-shortening disease for which there is no known cure, typically affects children and young adults, roughly 15,000 people worldwide. It causes scoliosis, loss of coordination (ataxia) in the arms and legs, fatigue, muscle loss, vision impairment, hearing loss, slurred speech and heart complications.
Yet, both girls maintain excellent grades and are college bound. Emily wants to work in the medical field. Nicole will attend College of DuPage this fall in and study animal science.
“Nicole’s my daughter, but she’s my hero. She’s awesome,” said Nicole’s mother, Kelly Kramer. “She never complains about what she’s going through and she never lets it get her down.”
For both Emily and Nicole, the disease first manifested itself as scoliosis and a mild balance disorder, which gradually grew worse, leading to further testing and eventual diagnosis. Both girls now speaking in halting tones, but there is nothing hesitant about their drive for life.
Unrelenting fatigue is their biggest battle, which means curtailing extracurricular activities and scheduling periodic rests throughout the day.
As a result of her disease, Nicole how also has hypertrophic cardiomyopathy, which reduces the oxygen in her blood and increases her fatigue.
Yet that didn’t stop Nicole, a recent high school graduate, from earning six scholarships. Nicole is also the first-ever recipient of her high school’s Warrior Award, presented to someone who overcomes adversity and inspires others to do the same.
Nicole, who will be working at a rest stop while Kelly completes the ride, is almost nonchalant about her limitations.
“I can’t play sports anymore,” Nicole said, “but I can still swim.”
Since her diagnosis, Emily’s family has raised $32,000 for Friedreich’s Ataxia Research Alliance, a national non-profit organization. They did it by hosting a series of fundraising cookouts.
Both families worked with event founder Kyle Bryant to bring Ride Ataxia to the Chicago area. These cycling fundraisers span the country and have, in the past five years, funded more than $1 million in research grants.
Many of Emily’s family and friends will be volunteering in various capacities at the event. But Emily, more than 20 of her friends and her sister Jamie Young, now an association publicist, will bike that day.
For more information, visit www.curefa.org.