24 hour bike ride to benefit Cystinosis
SANDPOINT — 24 Hours for Hank, a day-long bike ride to help find a cure for Cystinosis, will take place in Sandpoint on Sept. 6, at 11 a.m. Solo riders and teams up to four people will see how many miles they can ride in 24 hours. Teams will ride for prizes, bragging rights and most importantly, fundraising for Cystinosis research and Hank’s future.
The ride itself is a flat, 19-mile circuit starting in the Selle Valley off of Shingle Mill road. The route wanders through the scenic valley and along the Pack River to the Idaho Club where it turns and loops back to the starting point. It will be up to the teams to determine how many laps each member rides. Local businesses ranging from local restaurants, Sandpoint Sports, and Alternative Health Massage Therapy will have booths on location to help support riders.
The concept behind 24 Hours for Hank is simple; there will be two events a year to raise money for Cystinosis research. Besides the bike ride, there will also be a 24 hour ski race at Schweitzer, on Jan. 30-31, 2009. One rider hopes to bike the entire 24 hours, covering more than 300 miles.
Cystinosis is a rare metabolic disease that affects approximately 500 people in the United States (mostly children), and about 2,000 people worldwide. Hank was diagnosed in December of 2007 at 16 months-old. This recessive genetic disease causes the amino acid “cystine” to accumulate in the cells of the body. Over time, the cystine damages various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system.
Termed an “orphan disease,” Cystinosis has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications. Although there is a medicine that prolongs the lives of cystinosis sufferers, there is no cure.
The only treatment for Cystinosis is Cysteamine. Cystagon TM (Cysteamine) tastes and smells horribly and must be taken every six hours, every day, without fail. Although this has led to a much better future for children and young adults with Cystinosis, Cystagon TM is very hard on their bodies. In addition to Cystagon TM suffers have to take 4 - 5 other medications to control the side effects of Cystinosis. Due to the rigorous 6 hour medication schedule the children always feel the way you or I would right before we “bonk” or hit the wall. Dehydration is always a concern.
24 Hours for Hank is a non-profit, tax-exempt entity pursuant to Section 501(c) (3). Federal Tax ID #26-2856413. All net proceeds of the funds raised will go directly to The Cystinosis Research Foundation to support medical research. Your gift is tax deductible.
If you would like more information about this event, or would like to make a donation or pledge, please contact Brian Sturgis at 208-610-2131 or by email at “information@24hoursforhank.org” or visit “www.24hoursforhank.org.”