Race for the Cure By Joshua Nishimoto
Calling all racers! Mark your calendars for 2,400 Feet of Schweitzer, the longest Giant Slalom in the United States. This year, 24 Hours for Hank presents this annual fundraising event to help raise money to cure Cystinosis. Teams of skiers, boarders and telemarkers will ride for prizes, bragging rights, an online auction and, most importantly, fundraising for Hank’s future, providing financial support for vital research for the cure to Cystinosis.
Cystinosis is a rare disease that affects a small population. In November 2007, Henry (Hank) Sturgis was diagnosed with Cystinosis, a rare genetic disease that affects 500 people in the United States (mostly children), and roughly 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.
The amount of people affected by Cystinosis is so small that the much-needed research 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. Although research done on these types of rare diseases can be beneficial in other ways, there are no guarantees, therefore research funding is often scarce or nonexistent.
In 2008, Hank’s parents formed the organization 24 Hours for Hank, and soon after created partnership with the Cystinosis Research Foundation (CRF) to find a cure. To date, the foundation has raised over $1.25 million for Cystinosis research.
Thanks to the research performed by the CRF, in 2013, the FDA developed a slow-release formula of the powerful drug that helps children affected by Cystinosis that changed Hank’s daily dosage from six times a day to only twice a day.
“Hank is 15 now and he is doing really well,” said Brian Sturgis, vice president on the Board of Directors for 24 Hours for Hank. “The stem cell trials that we have been funding over the last 13 years is going through clinical trials. We have put five people through those clinical trials. Hank is not one of those five because of his age. Those five people are all currently doing well and no longer have to take the medications that they were taking before.”
Although 24 Hours for Hank has put on different events in the past, including Dinner with Ben Stein and Cycling for Cystinosis in 2012, currently you can sign up to race in the 2,400 Feet of Schweitzer Giant Slalom event on March 26, 2022 (online registration closes at noon on March 25), with all proceeds going to support 24 Hours for Hank and Cystinosis research. You can also visit 24HoursforHank.org/how-to-help for details on how you can become a 24 Hours for Hank Sustainer of Hope with a single one-time donation or set up a monthly donation, or donate by shopping on Amazon.com with Amazon Smile.
For additional information, and to view auction items, visit Event.Auctria.com.