What is Niemann-Pick Type C
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 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.
About Niemann-Pick Children\\\'s Fund
About Us
Niemann-Pick Children’s Fund, Inc. was organized in December of 2008 in order to raise awareness of Niemann-Pick Disease Type C and its affect on families in America; to raise money to promote research to find treatments or a cure for Niemann-Pick Disease Type C: and to provide support to individuals and families affected by this disease through existing channels.
Michael and Jennifer Stults who’s two eldest son’s Brisan and Parker were diagnosed with this rare neurodegenerative disease in August/September 2008 after years of aggravating doctor’s visits trying to understand what is wrong with their children, organized the Niemann-Pick Children’s Fund, Inc. Continue Reading
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NIH Clinical Trial of Cyclodextrin Update
TRND (Therapies for Rare and Neglected Diseases) and the NIH team met with FDA representatives on December 13th to discuss the progressive plans to bring Cyclodextrin to a clinical trial in 2012. For TRND, Niemann-Pick Type C is one of six pilot projects that were selected.
The NNPDF does a wonderful job of keeping families and people interested up to date on how things are progressing in the disease community for Niemann-Pick Type C. You can visit updates on their page here: http://www.nnpdf.org/aboutus_14.html Continue Reading
Vegas Casino Night Update
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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Matthew Lesko in Town For Vegas Casino Night
Matthew Lesko who is TV’s best known personality who genuinely seeks to educate the American pubic about available grant opportunities, will be attending our Vegas Casino night on November 11, 2011 at the Hilliard Art Gallery. You may best know him as providing detailed information on how to apply for government grants that most people are unaware of due to the lack of publicity.
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Vegas in Kansas City Casino Night Fundraiser 11-11-11
November 11, 2011 marks a special day for the Niemann-Pick Children’s Fund. It will host the “Vegas in Kansas City Casino Night” from 7-11 pm at the Hilliard Gallery in downtown Kansas City. Will you be there to show your support?
The money raised from the Casino Night will help further the fight against a horrible fatal disease called Niemann-Pick Type C. NPC is the cells inability to metabolize cholesterol that stores fatty lipids in the brain, liver, spleen, and bone marrow causing a domino effect of neurological problems that lead ultimately to their untimely death. No cure. It’s a 100% FATAL. Continue Reading
