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A Rare Lysosomal Storage Disease
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Archive for the ‘News’ Category

NIH Clinical Trial of Cyclodextrin Update

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 […]

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Vegas Casino Night Update

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 […]

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Matthew Lesko in Town For Vegas Casino Night

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 […]

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The Doctors TV Show | Niemann-pick Type C disease | Gavin Lopez

The Doctors TV Show | Niemann-pick Type C disease | Gavin Lopez

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. […]

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Potential Breahthrough in Niemann-Pick Type C Research

Potential Breahthrough in Niemann-Pick Type C Research

One thing that I’ve personally learned is not to get excited about many things when it comes to research for Niemann-Pick Type C. The job of PR firms and Press Releases are to generate buzz, hype, excitement, and positive feelings. Sometimes there are a lot of finite […]

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