Ski race raises $160K for research of rare disorder

By Jani Gonzalez
Reader Contributor

On the last Saturday in March, a 2.5-mile ski race raised money and hope for children and adults living with cystinosis, a rare genetic disorder with little research for new treatments.

Matt Gillis gives Hank a fist bump before taking a run at Schweitzer. Courtesy photo.

“It was near-blizzard conditions — windy, with poor visibility — not the best for ski racing, but the pow skiing was great,” said Matt Gillis, racer and event organizer.

Gillis, who by day is senior director of client success at Kochava, has been organizing the annual event for the past 10 years. Skiers raced the 2,400 ft from the Sky House at Schweitzer Mountain to the Outback lodge.

“This year, we shifted the event to do this race from the earlier endurance ones,” he explained. “We wanted to change up the event and do something that hadn’t been done before. Having a giant slalom was where we landed.”

The fastest skiers of the 2,400-ft (2.5-mi) race finished in three minutes and 26 seconds. The event attracted nearly 100 participants who raced in teams of two, three, and four people. In past years, participants skied around the clock to raise funds and or raced in a 24-hour bike event.

Skiing for cystinosis research

Gillis began fundraising for 24 Hours for Hank after he met Tricia and Brian Sturgis, parents of Henry, who was born with the rare disorder. Cystinosis affects organ function, the central nervous system and eyesight.

“I met them a few months after Henry was diagnosed…and I’ve been involved since day one in supporting them and fundraising,” he said.

Cystinosis is considered an orphan disease by the Food and Drug Administration because it affects fewer than 200K people worldwide. It affects 500 people in the U.S. and 2K globally; most individuals with the disorder are children.

Since he began in 2009, Gillis has raised over $250K, all of which has gone to the Cystinosis Research Foundation. And, the money has gone a long way: Treatments for cystinosis have improved dramatically, and the research has lead to discoveries beneficial to other diseases too.

“Since Henry was diagnosed, his treatment has improved from having to take medication every six hours to taking a slow-release medication that releases over that time,” Gillis said.

Henry’s parents also had to apply eye drops hourly but can now apply the medication using a nanowafer, a type of contact lens where the medication dissolves with time.

This year’s event brought in $160K, of which Gillis single-handedly raised over $35K. He begins fundraising in January and tackles the cause as he would any job.

“This has been something near and dear to my heart in more ways than I can communicate,” he said. “I’m always looking for different ways to get involved and help make a difference.”