October is Niemann-Pick Disease awareness month! Just wanted to pass along what many of you might be aware of if your connected in the NPC community. The below is directly from NNPDF’s site.
Please participate on 10-10-10 for a $10 donation online to the NNPDF. They are truly doing some great things and we are thankful to be able to have them around.
Take the NPD 10 – 10 – 10 Challenge!
Please Help Raise Awareness for Niemann-Pick Disease Continue Reading
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 what someone with Niemann-Pick Type C looks like or any other debilitating disease. The important feature to note is this disease can strike at any time. Some look completely “OK” and others you can tell something just isn’t right by their actions. Either way this horrible disease claims their life in it’s unrelenting attack on the nervous system.
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! Continue Reading
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 dares were to shave his head, dress up in a DealBug.com costume for a month, and the other was to go skydiving because he is afraid of heights.
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. Continue Reading
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