Participants and volunteers needed March 30-31
– Registration is now open for the fourth-annual “24 Hours of Schweitzer,” the all-day, all-night fundraiser held in honor of five-year-old Hank Sturgis of Sandpoint, who has the rare, fatal disease cystinosis that affects only 500 people nationwide.
Participants, volunteers and sponsors are needed for the March 30-31 round-the-clock ski relay, which is one of only three events like it in the country and one of the last times to enjoy Schweitzer Mountain Resort for the season.
“24 Hours of Schweitzer” is a team relay for skiers, telemarkers and snowboarders that begins at 8:30 a.m. on
Fri., March 30 and runs continuously through 8:30 a.m. on Sat., March 31. Participants raise pledges and see how many runs they can ski or ride in 24 hours. Skiers, telemarkers and snowboarders of all ages and abilities from around the region are welcome as solo racers, or three- or four-member teams. Teams will ski and ride on intermediate runs for prizes, bragging rights and most importantly, fundraising for cystinosis research and Hank’s future. Following the event is an auction/awards party that is open to the public.
“We welcome young and old, casual or serious participants, and there are many ways to get involved – start a team, join a team, participate for one hour, participate for 24 hours, ski during the day, or ski all night,” said Brian Sturgis, Hank’s dad and one of the event organizers. “Those that don’t ski or board can pledge a participant, volunteer to help out at the event, attend the auction or even donate an auction item. There really is something for everyone, and every little bit helps our mission to find a cure for Hank and others suffering from this deadly disease.”
The event benefits 24 Hours for Hank, a Sandpoint nonprofit established to raise money for cystinosis research and treatment. Funds raised locally are contributed to the national Cystinosis Research Foundation to help find a cure for this extremely rare, genetic disease that slowly destroys every organ in the body including the kidneys, liver, eyes, muscles, thyroid and brain.
As a tie-in to Hank’s love of super heroes, this year’s theme is “Hank’s Heroes: Mission Possible,” which recognizes participants for their efforts and the progress being made in the quest for a cure. “This event would not be possible without the remarkable dedication and ongoing contributions of our many friends and supporters, who are real heroes to Hank and our family,” said Sturgis.
“Already, promising new cystinosis treatments have been developed, funded 100% by donations like those raised through our Sandpoint events,” Sturgis added. “Hank has benefited directly, currently taking part in clinical trials of an experimental delayed-release medication that has reduced debilitating side effects, improved his quality of life, and enabled him to sleep through the night for the first time. The applications are far reaching, with new cystinosis treatment discoveries also being tested in trials for Huntington’s disease and Parkinson’s disease. We are on a direct path to a cure and getting closer each day.”
The entry fee for the ski event is $150 and includes a lift ticket, event t-shirt and participation award, meals, equipment support, sleeping bag accommodations in Lakeview Lodge, hotel discounts at Selkirk Lodge, and one ticket to the auction/awards party. Participants are encouraged to dress in super-hero costume at the event finish, and fireworks will be set off at the top of each hour throughout the night.
Awards will recognize youngest and oldest participants, most runs skied by an individual and team, and top fundraiser. Three-time event winner Matt Gillis, who logged a record 202 runs or 201,582 vertical feet as a solo skier at last year’s 24-hour fundraiser in Sandpoint, will attempt to break his record at this year’s event.
Following the ski event is a dinner and both silent and live auctions starting at 5:30 p.m. on Sat., March 31 in the Caribou Room in Schweitzer’s main lodge, which is open to the public (kids are welcome). The after-party will be held in Taps from 8:30 p.m. to midnight on March 31 in Schweitzer’s main lodge. Auction tickets are $45 and available at www.24hoursofschweitzer.com.
During last year’s event, more than 120 participants ranging in age from 4 to 69 completed a total of 9,561 runs in 24 hours, totaling 10,247,310 vertical feet. The 2011 event – which featured record-breaking performances and even a midnight marriage proposal – raised $90,000, making it one of the most successful cystinosis community fundraisers in the country.
For more information on the ski event and auction, to register, or to make a donation, call 208-610-2131 or visit www.24hoursofschweitzer.com. To volunteer, contact firstname.lastname@example.org. Major sponsors include Schweitzer, Subaru, TraskBritt, Litehouse, Ezy Dog, Odom Distribution, Sandpoint Sports, Pucci’s Pub, Powder Hound Pizza, Pita Pit, Sports Creel and GU Energy.
About Hank Sturgis
Hank was born in July 2006, a healthy 8½ pounds. At nine months old, he was losing weight, had trouble sitting up, and wouldn’t crawl. By 16 months, he had fallen off the growth chart. After many tests, Hank was diagnosed with Cystinosis, Fanconi Syndrome and rickets. Today he has a rigorous medication schedule as well as weekly physical therapy sessions. A G-tube inserted into the wall of his stomach helps deliver medications and extra calories. Despite his challenges, Hank is happy, lovable and full of spirit. He does not yet know what his future may hold – painful eye drops to prevent blindness, kidney transplant, heart problems, stunted growth, and other organ and muscle failures. His family hopes a cure will be found that will prolong his life.
Cystinosis is a rare genetic disease that affects just 500 children and young adults in the U.S. and only 2,000 people worldwide. The fatal disease causes the amino acid “cystine” to accumulate in the cells of the body, which over time damages various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Other complications include muscle weakness, growth loss, difficulty swallowing and developmental delays. Although medication is available to control some of the symptoms, there is no cure.
About 24 Hours for Hank
24 Hours for Hank is a nonprofit foundation established by friends and family of Hank Sturgis to raise money for cystinosis research. Since September 2008, the Sandpoint, Idaho-based organization has raised more than $300,000 for the national Cystinosis Research Foundation supporting medical research to improve treatment and ultimately find a cure for the terminal disease. For more information or to make a donation, visit www.24hoursforhank.org. All gifts are tax deductible as allowed under the tax code of the IRS.