Foundation History

The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is an international, voluntary, nonprofit organization made up of parents, medical and educational professionals, friends, relatives, and others who are interested in fighting Niemann-Pick disease.

Organizational History

On February 10, 1992, six families with children suffering from Niemann-Pick disease met at the National Institutes of Health at Bethesda, Maryland.  Concerned with cutbacks in funds for medical research and knowing without research there was little hope for their children, they decided to form a foundation - The Niemann-Pick Type C Foundation, Inc. By-laws were drafted and a board of directors was selected. Service activities began immediately and the first year saw many accomplishments.

* A Newsletter offering information and support was sent out

*  A Directory of NPC families was compiled and distributed to the families

*  An informational pamphlet was written and mailed to hundreds of professionals and organizations in the medical field to create awareness of this rare disease.

* Fundraising began to channel money into medical research.

* A Scientific Advisory Board of doctors and researchers was established.

* A paragraph was added to the Appropriations Bill for NIH to ensure continued funding for Niemann-Pick research at the federal level.

1993 was another busy year. The Foundation name was changed to the National Niemann-Pick Disease Foundation, Inc., nonprofit status was awarded by the IRS, the first family conference was held, and the first research grant was awarded to Dr. Eugene Carstea to identify the genetic cause of NPC. Dr. Carstea announced the discovery of the NPC1 gene four years later.

All of these services have continued and were enlarged over the years. 

Today:

* The Newsletter is now published three times a year .

* The Family Conference has grown 15 fold with separate sessions for Type B and Type C. Top researchers attend to interact with families and share their expertise.

*  The website was added in 1997, followed by an email discussion list.

* A National Niemann-Pick Coordinator is available to assist families with medical issues.

* Research grants increased from $14,583 in the first year to nearly $400,000 per year.

NNPDF was also a founding member of the Lysosomal Disease Research Consortium, which awards over $1,000,000 in related research grants annually. 

The National Niemann-Pick Disease Foundation currently has over 230 Niemann-Pick families as members. Thousands of medical, corporate, professional, friend and family sponsors assist in supporting our goals through contributions and donation of services. NNPDF is the largest Niemann-Pick family support organization in the world and one of the largest private funders of Niemann-Pick research.

Most Board members continue to be parents with children afflicted with NPD who work on a volunteer basis. Fund raising has increased tremendously but most of the money is still raised a result of NPD families working on a local basis.

And the six original families? Five have lost a child to Niemann-Pick.. All six are still NNPDF members and one remains on the Board of Directors.

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