- NNPDF Foundation Mission & Goals
- Foundation History
- Organizational History
- About Our Logo
NNPDF Foundation Mission & Goals
The National Niemann-Pick Disease Foundation is a non-profit 501c3 organization that supports and promotes research to find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.
NNPDF’s 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, 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 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. For detailed information, follow the links below.
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. Bylaws 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 families affected by NPC 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 Disease 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 expanded over the years.
- The enewsletter goes out to over 6,000 households.
- The NNPDF is a co-founder of the International Niemann-Pick Disease Alliance (INPDA)
- The NNPDF also works collaboratively with the Canadian Chapter of the NNPDF for research
- 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 Web site was added in 1997, followed by email discussion lists (listservs).
- A director of Family Services is available to assist families across the nation with medical issues.
- Research grants have increased from $14,583 in the first year to nearly $400,000 per year, for a total of $5.6 million put into research to date.
- NNPDF was 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 450 Niemann-Pick families as members. Thousands of medical, corporate, professional, friend and family sponsors assist in supporting our goals through contributions and donations of services. NNPDF is the largest Niemann-Pick Disease family support organization in the world and one of the largest private funders of Niemann-Pick Disease research.
The NNPDF’s board continues to be comprised mainly of parents with children affected by NPD. All board members donate their time to the NNPDF on a volunteer basis. Fundraising has increased tremendously with most of the money still being raised by NPD-affected families working in their local communities.
Of the six original families, five have lost a child to Niemann-Pick Disease. All six are still NNPDF members and one remains on the Board of Directors.
The Foundation has a record of getting things done. The NNPDF was founded in 1992. Since then, the Foundation has:
- Raised over $5.5 million for research on NPA, NPB, and NPC, family support, education, and other activities
- Funded research that led to the discovery of the NPC1 gene
- Funded research that has led to the identification of numerous gene mutations for use by researchers, clinicians, and in genetic testing
- Funded research to study the neurological effects of NPD
- Co-sponsored the first International Symposium on NPC
- Promoted awareness of NPD by publishing educational materials
- Held an annual conference every year since 1993 for families affected by all types of NPD, scientists, and others
- Published regular newsletters to keep families informed about the Foundation and the latest advancements in understanding NPD
- Provided listservs for NPD families to communicate with each other and share their thoughts, ideas, and experiences
The National Niemann-Pick Disease Foundation’s logo represents our commitment to support families affected by Niemann-Pick Disease and research toward finding treatments and a cure. With the passing of time there has been a need to change and update our logo, but the NNPDF board has worked to keep the spirit and inspiration of the below drawing as our underlying promise of “HOPE”. The rainbow colors are from our original rainbow logo, which was designed by Tommy Kenny.
Tommy passed away in 1995 from Niemann-Pick C. Although he knew he was seriously ill, he took strength from the rainbow as a symbol of hope and faith. We continue to share his hope and faith with the rainbow colors, our support of NP families, and our support for research.
Special thanks to Tommy’s Mother, Barbara Kenny, for sharing these pictures of Tommy with us and to Hunt Ozmer for contributing Tommy’s original drawing from his files.
Original Logo ~ 1992-2006
2008 – Present
The National Niemann-Pick Disease Foundation does not collect any identifying information about individuals visiting this web site (name, email address, etc). We do collect demographic information on the number of hits, number of unique visitors, etc to help us improve the site.
Information voluntarily provided by visitors to the site through email or forms is not sold to other organizations. Information may be shared with officers or members of NNPDF, affiliated researchers and physicians, or other organizations to provide a proper response to questions or concerns.
Information provided to companies listed on the NNPDF Stores is subject to the privacy policies of those companies.
At times, data may be collected for research studies, surveys, etc. When this is done, the recipient of the information will be clearly identified and visitors will have the option of not participating.