Wednesday August 25th Steve Hugunin’s hair line changed forever. Well maybe just for another 30 days! He participated with MyDunkTank.com in raising money for the Niemann-Pick Children’s Fund in honor of my two sons Brisan and Parker Stults. He had two weeks to accomplish his mission. The […]
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I’m very honored that me and my wife have been selected as one of the 30 people under the age of 30 who have contributed to our community in some manor. Although we feel we have a ton of work to accomplish, the Niemann-Pick Children’s Fund, Inc is dear to our heart. Our two oldest son’s Brisan and Parker Stults were diagnosed with a rare FATAL neurological disease called Niemann-Pick Type C Disease. Sometimes referred to as the “Childhood Alzheimer’s” because of the similar pathological features they share. They only have a childhood to live a lifetime.
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On June 5, 2010 Children’s Mercy Hospital had their 37th annual Hospital Hill Run that bears a lot of legacy in it’s longevity and fundraising for CMH! This year I decided that I wanted to participate in the run for Brisan and Parker but for future events […]
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This week the FDA has stated formally that they see promise in the use of Cyclodextrin in treating Niemann-Pick Type C (NPC) by granting its “Orphan Drug Designation”. In January of 1983, the Orphan Drug Act (ODA) was passed into law in the United States with consistent […]
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