What started out as a scoliosis diagnosis for two local teenage girls turned into a brave battle with a debilitating, life-shortening disease for which there is no known treatment or cure. Today, the two share a common goal: raise awareness and much-needed research funds for the disease they are determined to beat.
On July 22, Emily Young of Saybrook and Nicole Kramer of Villa Park, who are both battling Friedreich’s Ataxia (FA), will take part in cycling event in Chicago aimed at doing just that.
Ride Ataxia cycling events span the country and have raised invaluable awareness for FA and funded over $1 million in FA research grants in just five short years. The ride on the 22nd will launch from Channahon and offer 4, 12, 32, and 52 mile cycling routes on scenic country roads.
Ride Ataxia benefits FARA- a nonprofit organization dedicated to research leading to a cure for FA which typically affects children and young adults. Often, signs and symptoms – which worsen over time – include loss of coordination (ataxia) in the arms and legs, fatigue, muscle loss, vision impairment, hearing loss, slurred speech, and heart complications. FA affects roughly 15,000 people worldwide.
Emily Young from Saybrook, Illinois is 16 years old. She was diagnosed with FA at age 12 when her family requested some additional testing following a scoliosis diagnosis.
For the past four years, the Youngs have hosted FA fundraising events at their home for roughly 200 attendees, the last event alone raising more than $32,000. After seeing the success of past rides, this year, Emily and her family worked with Ride Ataxia Founder Kyle Bryant to bring an event to their home state to ensure an even larger impact.
As a part of “Team Emily,” Emily, along with her friends and family, will take part in the ride (Emily rides a recumbent trike), seek donations, and volunteer at registration and rest stops along the course.
Nicole Kramer from Villa Park, Illinois is 18 years old and was diagnosed with FA at age 15. What doctors originally thought was scoliosis later resulted in a serious heart condition (an enlarged heart - hypertrophic cardiomyopathy). The combination of symptoms led doctors to test for FA.
Nicole is a recent high school graduate and has received six scholarships. She was also the first ever recipient of her high school’s Warrior Award, an award presented to someone who overcomes adversity and inspires others to do the same.
As part of “Cole’s Crew”, Nicole will be volunteering at a rest stop alongside members of her family. Her mother and brother will be completing the ride and raising funds in her name.
Event Location: Channahon Central Park 24856 W Eames Channahon, IL, 60410
Pre-Registration Outback Steakhouse Joliet, IL 7/21/2012 4:30 pm - 6:30 pm
Registration 7/22/2012 6:30 am - 10:00 am
52 Mile Ride Group Start 7/22/2012 8:00 am
32 Mile Ride Group Start 7/22/2012 8:30 am
12 Mile Ride Group Start 7/22/2012 9:30 am
4 Mile Ride Start 7/22/2012 10:00 am
Lunch provided by Outback, Carrabba's & Bonefish Grill 7/22/2012 11:00 am - 2:00 pm
Online Registration Fees:
12, 32 and 52 mile cyclist: $40.00
4 mile cyclist: $35.00
Same Day Registration Fees:
12, 32, and 52 mile cyclist: $45.00
4 mile cyclist: $40.00
For more information about the ride or to register to participate, visit www.rideataxia.org/chicago
About Friedreich’s Ataxia Research Alliance
The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances. For more information about FARA, visit them online at www.curefa.org.