Good cause adds to 24 Hours of Schweitzer’s festivities

A few seasons ago my brother-in-law Robb Peterson and I wanted to know how many runs we could ski at Schweitzer in a day. We logged 18 by lunchtime and finished with 31. Thirty-two was out of the question.

That kind of effort will be a warmup for some at 24 Hours of Schweitzer, a ’round the clock team relay race beginning at 10 a.m. next Friday. The event is a fundraiser organized by Robert Timmons and employees at Coldwater Creek in Sandpoint to support research into a cure for cystinosis, a rare congenital disease.

Timmons, 37, a vice president of Time Warner in Colorado, was moved to create the event by Hank Sturgis, the 21/2-year-old son of his friends Brian and Trish Sturgis of Sandpoint. Hank was born with cystinosis, which forms crystals, or cystones, in vital organs, eventually shutting them down.

“Last year I was sitting here in Denver, frustrated,” said Timmons, who grew up in Sandpoint and owns a residence at Schweitzer. “I wanted to help find a cure for cystinosis myself, because nobody has come up with a plan.”

Cystinosis affects about 500 people in the United States, mostly children. It’s called an “orphan disease,” because the low number of cases promises no big profits for big pharmaceuticals.

To raise pledges and donations, Timmons and Sturgis teamed up last fall to organize 24 Hours for Hank, a cycling event in Sandpoint. About 100 riders rode 7,000 miles on Sept. 6 and raised $42,000 for cystinosis research. The event’s success inspired Schweitzer’s management to sanction next week’s skiathon.

“The people at Schweitzer are bending over backward for us,” Timmons said. “They’ve donated their facilities, lifts, groomers and volunteers from the ski patrol.”

Hank was diagnosed at 16 months. Kids with cystinosis usually need organs replaced by age 10 to survive.

“Hank was diagnosed early and our hope is that it won’t happen quickly for him,” Timmons said. “Doctors have put him on medication to slow the process. He takes the medication every six hours through a feeding tube in his stomach because it’s like drinking acid, just horrible.”

The treatment is hard on Hank’s little body. He takes five other medications to control the side effects. But it won’t stop him from riding into the village on a fire truck to kick off 24 Hours of Schweitzer.

Race categories include solo, plus three- and four-person teams. The $125 entry fee covers a two-day lift ticket good Saturday after the event, plus a T-shirt, meals, equipment support, crash space in Lakeview Lodge, hotel discounts at Selkirk Lodge and a dinner and silent auction Saturday night.

Daylight runs drop from Sunnyside chair. At sundown the event moves to the Lakeview Express quad. After night skiing ends at 11, the scene shifts to Musical Chairs. Chair four turns again at 7 a.m. The race concludes at 10 a.m. Jan. 31.

Prizes will be awarded to teams and solos with the most runs, plus top fundraisers. Timmons said more than 60 volunteers handle logistics. Volunteers get access to the hill and all the meals.

“For those who don’t want to ski or ride, the Saturday night dinner auction will be a blast,” he said. “Items include a six-bedroom house in Steamboat for a week, and places in Schweitzer, San Diego and Hawaii.”

Proceeds go to The Cystinosis Research Foundation. Gifts are tax deductible.

To sign up for this unique downhill experience, visit 24hrsforhank.org. You can also use the Web site to reserve a seat at the dinner auction, make a donation, or volunteer.