About 24 hours for Hank
24 hours for Hank is a non-profit 501c set up by friends and family of Henry Sturgis in 2008. Our hope is to find a cure for Henry and all children that suffer from Cystinosis. Because Cystinosis is considered an “orphan disease” all research funds are generated by the private sector. We are proud to be in partnership with the Cystinosis Research Foundation. Thanks to their hard work funds have already been raised through private individuals and businesses to start research for better medication and hopefully a cure. Thanks to the CRF, a slow release formula of the powerful drug that helps our children was developed and is currently in phase 3 of the clincal studies that will change the daily dosage to only twice a day.
Raptor Pharmaceuticals and the CRF are hopeful that it will be approved by the FDA in 2010 so Henry can start using it. 24 Hours for Hank with your help has contributed $175,000 to date to support the CRF in funding the researchers and doctors that hold Henry’s future.
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.
About Henry
Henry was diagnosed with Cystinosis in November 2007 after seeing a team of specialists at Children's Hospital in Seattle. He was 16 months old. He then began the demanding medication schedule of five different medications every 6 hours, 8am, 2pm, 8pm and 2am.
Before Henry was diagnosed the disease had already caused him to develop other problems including Fanconi Syndrome (kidney failure) and Hypophosphatemic Rickets (bone disease that causes soft, bowed bones). The nutrient imbalances due to these conditions cause increased urination, thirst, dehydration and abnormally acidic blood levels.
In May of 2008 Henry had a successful operation for the placement of a g-tube in his stomach so his parents can administer the medications through the tube instead of forcing him to drink them. This has been a tremendous help in being compliant with his med schedule.
Since being diagnosed Henry takes 22 doses of medicine per day to maintain his condition. 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.
Despite having a terminal illness, Henry is a happy and courageous little boy who makes those around him appreciate life and the true gift he is.
Current Research: