BENEFITING: 24 HOURS FOR HANK INC
My name is Dave Sturgis and this is my Grandson Henry. Henry has a rare metabolic disease called Cystinosis. I just turned 70 and am riding my bike in Race Across America www.raceacrossamerica.org - the world’s toughest bicycle race to raise funds to find a cure for Henry and those that suffer from Cystinosis.
Cystinosis is an incurable disease that only affects approximately 500 people, mostly children in the US and 2,000 worldwide, based on these rates, Cystinosis research is primarily funded through private donations.
Since being diagnosed Henry takes 22 doses of medicine per day to maintain his condition and hopefully stabilize this disease. He also takes a Growth Hormone shot 6 days a week. He has occupational therapy, physical therapy, and speech therapy weekly, blood draws every two months and is seen by a kidney specialist quarterly to monitor his kidney function.
In June of 2015 I will be on my bike, racing across America, but the most important race is to find a cure for Cystinosis for my grandson Henry and all the children that live with Cystinosis. With your help, life free of Cystinosis is within reach.
Time is of the essence - Thank you for supporting our family's race to save Henry.
To learn more about Henry and Cystinosis please visit www.24hoursforhank.org