Registration opens for Cycling for Cystinosis fundraiser
SANDPOINT — Calling all bike riders looking for a good cause — including kids. Registration is now open for the Cycling for Cystinosis fundraiser held in honor of Henry “Hank” Sturgis, a six-year-old Sandpoint boy with a rare, fatal disease called cystinosis that affects only 500 children and young adults in the entire country, or just one in 600,000 Americans.
During the round-the-clock, team relay road ride, participants raise pledges and see how many laps they can bike ride in 24 hours, beginning at 11 a.m. on Saturday, Sept. 8 and ending at 11 a.m. on Sunday, Sept. 9.
Each lap is 19 miles long with very little elevation gain, and four miles for 14 years-old and under. All age levels and abilities are welcome — anyone that can ride a bike, any kind of bike, can participate.
Also this year Chuy Fragoso will be attempting to run 200 miles in 40 hours. Fragoso will start his attempt 16 hours ahead of the bikers.
Rider categories include solo participants, as well as two, three and four-person teams. Teams ride for prizes, bragging rights and most importantly fundraising for cystinosis research and Hank’s future.
“Really, it’s all about having fun for a good cause,” said Tricia Sturgis, Henry’s mom. “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.”
The event benefits 24 Hours for Hank, a local nonprofit established to raise awareness of cystinosis and support fundraising efforts to find a cure for this extremely rare, genetic disease that eventually destroys the organs in the body including the kidneys, liver, eyes, muscles and brain.
To date, in only two years, the 24 Hours for Hank foundation has helped raise more than $500,000 toward a cure for cystinosis through local ski and bike benefit events.
While “Cycling for Cystinosis” has attracted experienced cyclists, leisure riders and families are encouraged to participate, too. 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.”
For information, to register, or to make a donation, call 610-2131 or visit www.24hoursforhank.org.
Major sponsors include A-Z Rental, North Idaho Steam Cleaning & Restoration, Litehouse, Bonner General Hospital, Greasy Fingers, Advance Physical Therapy and Pita Pit.
n About Henry Sturgis
Henry was born in July 2006, a healthy eight pounds. At nine months-old, he was losing weight, had trouble sitting up, and wouldn’t crawl. By 12 months, there were more signs something wasn’t right, but the problem remained a mystery. At 16 months, he had fallen off the growth chart. After a blood and urine test, Henry was diagnosed with cystinosis, Fanconi Syndrome and rickets. Today he has a rigorous schedule of five medications every six hours, as well as multiple physical therapy sessions weekly. A G-tube inserted into the wall of his stomach helps deliver medications and extra calories. Despite his challenges, Henry is happy, lovable and full of spirit. He does not yet know what his future may hold — painful eye drops to prevent blindness, kidney transplant, heart problems, stunted growth, and other organ and muscle failures. His parents hope a cure will be found that will prolong his life.
n About 24 Hours for Hank
A nonprofit foundation established by friends and family of Henry Sturgis, 24 Hours for Hank raises money for cystinosis research. Since September 2008, the Sandpoint-based organization has helped raise more than $500,000 for 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.