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
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 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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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
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
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