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2400 Feet of Schweitzer 2021

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2400 Feet of Schweitzer 2021

Since being diagnosed at sixteen months old Henry (now 14) takes 51 doses of medicine per day to  maintain his condition and hopefully stabilize this disease. He also takes a eye drops multiple times per day to reduce the cystine crystals in his eyes that feel like sand.  For 4 years he took Growth Hormone shots 6 days a week. He has occupational therapy weekly, blood draws every two  months and is seen by a kidney specialist quarterly to monitor his  kidney function. In March 2021 we will be having our 12th annual ski  event at Schweitzer Mountain Resort.  With your help, life free of  Cystinosis is within reach. Today Cystinosis is an incurable disease that only  affects approximately 500 people, mostly children in the US and 2,000  worldwide, based on these rates, Cystinosis research is primarily funded  through private donations.  Over the last year there has been a stem cell transplant trial be conducted that is showing promising results to stop the progression of Cystinosis.  This trial would not of been possible without donations like yours.   Thank you for  supporting our family's race to save Henry. 


To learn more about Henry  and Cystinosis please visit www.24hoursforhank.org  

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Schweitzer Mountain Resort, Schweitzer Mountain Road, Sandpoint, ID, USA
10000 Schweitzer Mountain Rd, Sandpoint, ID 83864, USA

Hank & Cystinosis

Since being diagnosed at sixteen months old Henry (now 14) takes 51 doses of medicine per day to  maintain his condition and hopefully stabilize this disease. He also takes a eye drops multiple times per day to reduce the cystine crystals in his eyes that feel like sand.  For 4 years he took Growth Hormone shots 6 days a week. He has occupational therapy weekly, blood draws every two  months and is seen by a kidney specialist quarterly to monitor his  kidney function. In March 2021 we will be having our 12th annual ski  event at Schweitzer Mountain Resort.  With your help, life free of  Cystinosis is within reach. Today Cystinosis is an incurable disease that only  affects approximately 500 people, mostly children in the US and 2,000  worldwide, based on these rates, Cystinosis research is primarily funded  through private donations.  Over the last year there has been a stem cell transplant trial be conducted that is showing promising results to stop the progression of Cystinosis.  This trial would not of been possible without donations like yours.   Thank you for  supporting our family's race to save Henry. 


To learn more about Henry  and Cystinosis please visit www.24hoursforhank.org  

Posted by 24 HOURS FOR HANK INC