NEW FOR 2014
24 Hour Challenge Category & 24 Hour Endurance Category!
Cowboy UP for a Cure
March 21st - 22nd
Schweitzer Mountain Resort
24 hours of Schweitzer is a team relay for skiers, telemark skiers, and snowboarders beginning on Friday and ending on Saturday. Your team decides how many runs each person takes. Teams will ski and ride for prizes, bragging rights and most importantly fundraising for Cystinosis research and Hank's future. On Saturday evening after the event there is an awards party and auction that includes food from around the world.
Limited to 200 participants.
NEW FOR 2014 - 24 Hour Challenge Category!
24 Hour Endurance Category - Details
As many runs as you can make in 24 hours on dedicated closed runs.
Accumulate points as your team skis the entire resort, complete 24 challenges to earn bonus points.
Team prizes for each category
Top fundraiser - You will want to win this!
How to Register:
** Bring in $750 in donations and receive a 24 hours of Schweitzer jacket.
Entry fees and donations to teams can be made online or by check (payable to 24 Hours for Hank).
What's included in entry fees:
What is Cystinosis?
Cystinosis is a rare metabolic disease that affects approximately 500 people in the United States (mostly children), and about 2,000 people worldwide. This disease causes the amino acid "cystine" to accumulate in the cells of the body. Over time, the cystine damages various organs including the kidneys, liver, muscles, white blood cells, eyes, and central nervous system. Other complications include muscle wasting, growth loss, difficulty swallowing, and developmental delays.
Termed an "orphan disease," Cystinosis is a disorder which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat it or prevent it. There is a medicine that prolongs the lives of Cystinosis sufferers, but there is no cure. Cystagon, the powerful medication used to treat Cystinosis, must be consumed every six hours. But the medicine's severe side effects and demanding dosing schedule, for which parents must awaken children nightly from their sleep, often results in poor compliance. Eye drops are available to stop the painful accumulation of cystine crystals on the corneas but they must be refrigerated and taken every waken hour.
Children with Cystinosis generally appear normal during the first 9-10 months of life. By one year of age, symptoms occur including excessive thirst and urination, failure to thrive, slow growth, metabolic acidosis and other chemical and renal tubular abnormalities. Children often appear pale and thin and have short stature. The abnormally high loss of phosphorous in the urine leads to rickets. After one year of age, cystine crystals appear in the cornea and cause a severe sensitivity to light (photophobia). Due to the rigorous 6 hour schedule of taking 5 different medications the children always feel the way you or I would right before we "bonk" or hit the wall. Dehydration is always a concern. In time, patients can develop problems such as hypothyroidism, severe muscle weakness and central nervous system complications. These children have normal intelligence, but have an unusual defect in short-term visual memory. Many have poor GI motility. Cystagon TM causes hyper secretion of gastric acid, resulting in gastric distress.