24 hours for Hank

Welcome and thank you for your interest
in 24 hours for Hank!

Hi, my name is Henry, but my friends call me Hank. In November 2007 I was diagnosed with Cystinosis, a rare genetic disease that affects approximately 500 people in the United States (mostly children), and about 2,000 people worldwide. This disease causes the amino acid “cystine” to accumulate in the body’s cells. Over time, cystine buildup slowly destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system.

Because Cystinosis is such a rare disease that affects such a small population, research money is scarce to nonexistent. 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 to treat it or prevent it. Yet research on complicated diseases like Cystinosis often lead to advancements in other rare diseases. In 2008 my parents attended a fundraiser in California to raise money for research, and after talking to physicians and researchers are very hopeful a cure will be found some day soon.

In an attempt to help that day come sooner than later, their friends and family started this foundation to help raise funds for research. To date the foundation has raised over $623,000 for Cystinosis Research. Our next fundraiser will be 24 Hours of Schweitzer, March 21st - 22nd 2014 at Schweitzer Mountain Resort in Sandpoint, Idaho 

Photo courtesy of Rebecca Holland, All-Star Photo

 Recently in the news! 

April 30th, 3013 - FDA APPROVES "PROCYSBI" slow release medication. 

"FDA approves cysteamine HCL eye drops for treatment of corneal crystals in cystinosis patients!" - October 18, 2012

"Cystinosis Research Foundation Awards $2 Million in 2011 for Grants to Find a Cure for Deadly, Genetic Disease"-Market Watch, Wall Street Journal, January 5, 2012


Latest News & Events 

  24 Hours of Schweitzer 2014                              March 21 - 22, 2014              Schweitzer Mountain Resort                                 »details

24 Hours of Schweitzer 2013
March 22-23, 2013
Schweitzer Mountain Resort
Cycling for Cystinosis - 24 Hr Road Ride
September 8th, 2012
Schweitzer Mountain Resort
24 Hours of Schweitzer 2012
March 30-31, 2012
Schweitzer Mountain Resort
24 Hours of Schweitzer 2011
April 1-2, 2011
Schweitzer Mountain Resort
24 Hour Road Ride
September 11, 2010
Sandpoint, Idaho
24 Hours of Schweitzer
January 22-23, 2010
Schweitzer Mountain Resort
24 Hours of Schweitzer
January 30-31, 2009
Schweitzer Mountain Resort
24 Hour Road Ride
September 6-7, 2008
Sandpoint, Idaho


 

A Nonprofit Foundation in Partnership with Natalie's Wish & The Cystinosis Research Foundation

Site by Friends of Hank, CornerStone Creations & The Dev Department