What is the National Niemann-Pick Disease Foundation?
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.
Our vision is a world where Niemann-Pick disease is no longer a threat to a full and productive life for patients and their families. Medical professionals, thoroughly familiar with the disease, will promptly and accurately diagnose it early in the patient's life, perhaps prenatally, and then prescribe an appropriate therapy. Families affected by Niemann-Pick disease will not be devastated by the diagnosis or its impact on their lives. Individuals with Niemann-Pick disease will have the same chance as their siblings and peers to run and play, to hope and achieve, and to live out their dreams.
The mission of the Foundation is to support and promote research to find a cure or treatment for all types of Niemann-Pick Disease and provide support services to affected individuals and families.
We invite all interested people and organizations to join the NNPDF and support its efforts to achieve this vision. You can also make a donation by mail or online. If you have questions not addressed on this website about NNPDF, its services, or how your support can help, please contact our Office.
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, knowing without research there was little hope for their children, they decided to form a foundation. Little did they realize where that would lead.
The Niemann-Pick Type C Foundation, Inc. was established. 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.
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 at local hospitals.
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 now.
NNPDF was a founding member of the Lysosomal Disease Research Consortium, which awarded $1,000,000 in related research grants in 2005.
Present Status 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 the second largest private funder 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? Four have lost a child to Niemann-Pick (as of May 2006). All six are still NNPDF members and two remain on the Board of Directors.
See also:"Research Grants Funded by NNPDF"
