When he was 16 months old, Brian and Tricia Sturgis’ son Henry (Hank) was diagnosed with cystinosis, a rare genetic disease that causes the amino acid cystine to build up in the cells and over time destroy various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system.
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Cystinosis is an orphan disease, with only 500 cases in the U.S. and 2,000 worldwide. As a result, there is no incentive for pharmaceutical companies to fund research, which means any research for a cure or treatment must come from private funding.
When Hank was diagnosed, friends of the family wanted to know how they could help. Hank’s cystinosis requires care 24 hours a day, so the group asked themselves what they could do for 24 hours without stopping. The result was the first fundraiser bike ride in 2008, followed by 24 Hours at Schweitzer—a full day of around-the-clock skiing to raise funds for cystinosis research. The Schweitzer fundraiser has continued each year and has contributed to helping the 24 Hours for Hank foundation raise more than $1.25 million for research.
“The support that Sandpoint gives our foundation is unbelievable,” says Brian Sturgis. “It’s really rewarding for me to come back every year and tell people about where their dollars are going and how it has made a difference.”
This year’s 24 Hundred Feet of Schweitzer is March 28 and will feature a giant slalom race from summit to base before the ski resort opens to the public. One hundred percent of every dollar raised goes straight to funding research at the Cystinosis Research Foundation and has helped fund two calls for research every year—which is more than double what most research foundations can do.
Non skiers and snowboarders can still get involved by attending the awards dinner and auction that is open to the public and features gourmet food from the chefs at Schweitzer, who are cut loose to make whatever they want, says Sturgis. “The fundraising that we do is making very much of an impact on human lives right now,” he says. “Money you donate today is making a difference in kids’ lives.”