September 5, 2010 in Idaho Voices

24-hour bike ride rallies community to help fight cystinosis

Patty Hutchens pattyhutchens@yahoo.com
 
About the foundations

Funds raised support the National Cystinosis Research Foundation supporting medical research to improve treatment and ultimately find a cure for the terminal disease.

For more information or to make a donation, visit www.24hoursforhank.org. All gifts are tax deductible.

When they first established a foundation in honor of their son who is fighting a rare genetic disease, Brian and Tricia Sturgis never imagined their efforts would not only raise the money the foundation has, but draw so many people together to find a cure for cystinosis – a fatal disease that destroys the organs in the body including the kidneys, liver, eyes, muscles and brain.

According to Tricia Sturgis, cystinosis affects only 500 children and young adults in the entire country, or just one in 600,000 Americans.

“September marks the two-year anniversary of our very first fundraising event, and since then we’ve raised more than $175,000 toward a cure for cystinosis,” said Tricia Sturgis, who together with Brian oversee the 24 Hours for Hank Foundation named after their now 4-year-old son Henry Sturgis.

Next weekend this community will again come together to do what it can to help one of its own. Cycling for Cystinosis is a 24-hour bike ride.

“While Cycling for Cystinosis has attracted experienced cyclists – leisure riders and families are encouraged to participate, too,” said Sturgis. “It’s all about having fun for a good cause. The event is open to anyone in the region that can ride a bike, including casual riders and kids. People can choose their level of involvement, whether it’s riding solo or part of a team, and participating the entire 24 hours or just part of the time.”

Tricia adds that this year they have added a kids’ ride – a four-mile loop for those 14 and younger.

The event begins at 11 a.m. on Saturday and ends at 11 a.m. on Sunday. With each lap 19 miles and little elevation gain, the course is one that people of all ages enjoy. It will take place just north of Sandpoint in Selle Valley and overnight camping is available.

Riders can participate either alone or as a member of two-, three- or four-person teams. Participants raise pledges and see how many laps they can bike ride in 24 hours.

During the inaugural Cycling for Cystinosis event held in September 2008, 97 riders rode a total of 9,234 miles in 24 hours, raising more than $42,000 to support cystinosis research. Riders ranged in age from 6 to 65, with the winning team logging 47 laps, or 893 miles, in just 24 hours.

Participating again this year is Jacob Styer who was part of the 2008 team, and who individually tied for first place for riding 285 miles.

According to Tricia Sturgis, Styer and his team have a goal of completing 1,000 miles next weekend.

A new twist to this event is an individual who is choosing to run instead of bike the event. Chuy Fragoso won a bronze medal in power lifting at the 1996 Junior World Championships in Finland and has a goal of running 104.8 miles – equivalent to four marathons – during a one-week period leading up to the event.

No matter whether you are an experienced athlete or just want to get out for a bike ride and help a good cause, Sturgis said it promises to be a fun time.

“Sandpoint is home to such beautiful scenery and so many outdoor enthusiasts, which combine perfectly for this event. Each day, we get closer to a cure for Henry and others facing this terminal disease,” said Sturgis. “We wouldn’t be this far without the support and generosity of the surrounding community – from Sandpoint and Coeur d’Alene to Spokane – which has helped us become a leader nationwide in raising funds for a cure.”


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