CCNNPDF Clinical Trials: News & Updates

NIH Cyclodextrin Trial
For Niemann-Pick Disease Type C ~ Pediatrics
~ UPDATE ~
Dateline: 01/07/2015



We received the following update from Dr. Denny Porter with reference to the NIH/TRND Cyclodextrin Clinical

Canadian Chapter of the
National Niemann-Pick Disease Foundation

~ Research Strategy ~

In 2014, the Canadian Chapter of the National Niemann-Pick Disease Foundation, in collaboration with the National Niemann-Pick Disease Board of Directors, reviewed its research funding strategy and has produced a new strategic plan for research.

Account was taken of the needs of our Membership; current knowledge in the field of Niemann-Pick Disease; the funding strategies of other NPD organizations; and the advice and expertise of the members of the NNPDF's Scientific Advisory Board.

As a result we are pleased to announce that the CCNNPDF, in collaboration with the NNPDF, will fund Pre-Doctoral, Post-Doctoral and Early career investigator fellowships in all areas of promise - basic, translational and clinical research- with regards to Niemann Pick Disease.

The CCNNPDF strives to enable promising new researchers to make a career in the field of Niemann-Pick Disease, thus providing for a new generation of scientists to accelerate the pace of NPD research.

"The NPD community is one of the most collaborative there is. The level of idea/data sharing among scientists is remarkable. We are also a model for other rare disease with respect to our ability to accelerate work at the bench to therapeutics. And much of this had been made possible by the family-researcher partnerships that have sustained this work over the past 20 years." - Dan Ory, Current NNPDF Scientific Advisory Board member & past SAB Chair (Sept 2007 ~ Jan 2014)

A key element to the foundation research strategy for both the CCNNPDF & NNPDF is the ability to track funds raised within the communities of our family membership.  Great care is given to identify monies received at the CCNNPDF & NNPDF Central Offices through family fundraising efforts so that a specific designation by disease type and a restriction towards research can be made.  The CCNNPDF & NNPDF are proud to ensure our NPD family membership that 100% of the funds raised through their community events are directed towards NPD research!

Current CCNNPDF Funded Grants & Fellowships