Bill Jennings: 24 hours of skiing to battle childhood disease

With a Camelback and a couple of peanut butter sandwiches on board, I can usually last about five hours on skis. That’s nothing compared to 24 Hours of Schweitzer, the marathon that starts at 10 a.m. on Friday morning at the resort. Like the name says, the event is an endurance test that gives people the rare opportunity to find out how many runs their sleep deprived bodies and minds can manage in 24 hours.

The 24 Hours of Schweitzer is an annual fundraiser launched in 2009 by Brian and Tricia Sturgis of Sandpoint to support research into a cure for Cystinosis, a rare congenital disease.

The Sturgis’ 9-year-old son Hank was born with Cystinosis. The disease affects about 500 people in the U.S., mostly kids. It causes the amino acid cystine, a building block of proteins, to accumulate into crystals called cystones. Cystones damage cells in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without drug treatments and distressing side effects, Cystinosis is ultimately fatal.

Cystinosis is called an “orphan disease,” because the low number of cases doesn’t attract a lot of investment for a cure. The Sturgis family and their friends created the non-profit 24 Hours for Hank in 2008. Since then they’ve raised more than $620,000 to support the Cystinosis Research Foundation with community events such as 24 Hours of Schweitzer.

Participants in the skiathon can race solo, or on teams. The event begins in the morning on Schweitzer’s Quicksilver run and moves to the resort’s NASTAR racecourse in late afternoon. While the rest of the Western hemisphere is asleep, skiers and riders will be racking up runs on the gentle incline of Musical Chairs. At sunrise, everyone returns to shred a freshly groomed Quicksilver until the finish.

The theme of this year’s event is “Rock around the Clock.” It’s no idle title. Bands, DJs and solo artists will be performing in the village for the entire 24 hours. Open mic and karaoke are also on the agenda.

I’ve participated in 24 Hours of Schweitzer twice. It was more challenging than I ever expected. I failed to go the distance the first time. I exceeded my goal of 100 runs on the second attempt. But after 109 runs, I was a yard sale waiting to happen. My experience makes the record for the event, 220 runs set by Matt Gillis of Sandpoint in 2013, all the more unfathomable.

You may want to stay out of the way of the serious competitors in pursuit of Gillis’ record. Such a feat requires plunging in a tuck on every run, never turning, and never stopping – not even for biological functions – for 24 hours. Should you happen to be there and see yellow snow under the lift, you’ll understand the magnitude of such a commitment.

Innovations funded by 24 Hours for Hank and other similar organizations throughout North America that have raised millions for research include a new slow-release medication that replaces a drug with unpleasant side effects that had to be taken every six hours. It set the Sturgis family free from organizing their life around the next dose.

“Henry was involved in a clinical trial at Stanford that led to FDA approval of the new medication about a year and a half ago,” Sturgis said. “We’re also looking forward to approval of a contact lens that slowly releases medication, instead of the hourly eye drops we use now.”

Sturgis said the most exciting development could be a cure for Cystinosis that has been successful in laboratory mice. The Cystinosis Research Foundation has submitted applications to the FDA to start human clinical trials.

It’s too late to register for the event this weekend, but you can still do your part to support Hank and children like him at the awards dinner and auction party on Saturday night at 6 p.m. in the Lakeview Lodge. You’ll get a gourmet meal for $25 and have a chance to bid on Seahawks and Broncos football packages, vacation getaways and more than 100 other silent auction items. Proceeds go to The Cystinosis Research Foundation. Gifts are tax deductible.