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A Rare Lysosomal Storage Disease
Contact: info@npcfund.org

Archive for 2010

Impact of Niemann-Pick Type C

Actelion Pharmaceuticals LTD produced a short video on two families and how Niemann-Pick Type C Disease has impacted their lives. Hollie Carter and Annie Pyne are featured in this video. They both are youngsters living with this disease. At first sight we all instantly start to evaluate […]

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Your Vote Can Save Lives | Rare Disease

Please watch this short message! Just hit the right arrow to proceed through! Your vote could help us win! We want to do something special with this money!

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MyDunkTank.com Dare By Steve Hugunin | Niemann-Pick Type C

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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Need Your Vote. 30 Under 30 Event

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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Promising Therapies for Niemann-Pick Type C Disease

In Rockville, MD on June 3-4th many of the researchers looking into different areas and avenues for Niemann-Pick Type C came together to discuss promising therapies. Although research is making progress, parents of NPC patients never feel that research is happening fast enough.

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