On November 11, 2011 we held our Vegas Casino Night at the Hilliard Art Gallery here in downtown Kansas City. The weather was beautiful for a November day opposed to having snow, rain, and sleet! We all had prepared for this big day and were brought together because of two special little men, Brisan and Parker Stults. They are living with what they sometimes refer to as the “Childhood Alzheimer’s” or lesser known as Niemann-Pick Type C Disease.
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Gavin and His Mother’s Heartbreaking Story
Kristen and Fernando Lopez have 3 children from Little Elm, Texas. Gavin there oldest son has Niemann-Pick Type C disease. Recently they were on the TV show The Doctors talking about their guilt about having a child with Niemann-Pick Type C. This is very normal to have these feelings because we as parents love our children so much that we want to fix them even with a rare disease. The show was focusing around Overcoming Guilt. Continue Reading
We have put together a short video of Brisan and Parker Stults to help raise awareness through social media outlets. The upcoming 2011 year should bring hopefully other insightful videos that can be shared with our friends, family, coworkers, and complete strangers. The whole object with any rare disease is to explain a message in the shortest amount of time to help create emotion. We all act upon our emotions and that has done an incredible amount of good in our society.
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.
Make sure to check out the videos! Learn more about Lysosomal Storage Diseases and Niemann-Pick Type C Disease. It has such a profound effect on families!
http://www.npcfund.org/what-is-npc/videos.html
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