About 24 hours for Hank
24 hours for Hank is a non-profit 501c set up by friends and family of Hank Sturgis in 2008. Our hope is to find a cure for Hank 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 approved by the FDA in 2013 that changed the daily dosage to only twice a day.
Hank was in the clinical study for this new medication and has been taking it for over two years. It has been life changing for him and our family. With your help 24 Hours for Hank has contributed over $623,000 to date to support the CRF in funding the researchers and doctors that hold Hank’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.
Hank 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 Hank 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 Hank had a successful operation for the placement of a g-tube in his stomach so his parents could administer the medications through the tube instead of forcing him to drink them. This was been a tremendous help in being compliant with his med schedule.
In 2011 Hank was admitted into a clinical trial for a new slow release medication (RP103) reducing the dosing schedule to every 12 hours. This new medication was life changing. For the first time in his life Hank was able to sleep through the night. The clinical study required quarterly trips to Stanford for blood tests, EKG’s and doctor checkups. In April 2013 RP103 or Procysbi was FDA approved and is now available to all people with cystinosis in the USA and is now in clinical trials to treat more prevalent diseases such as Huntington’s and NASH. The Cystinosis Research Foundation funded all stages of Procysbi’s development.
In 2014 Hank started taking all of his medication orally. He currently takes 39 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 three months and is seen by a kidney specialist quarterly to monitor his kidney function.
Despite having a terminal illness, Hank is a happy and courageous little boy who makes those around him appreciate life and the true gift he is.