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Together we stand strong: 15th annual October global Niemann-Pick disease awareness month.

The National Niemann-Pick Disease Foundation (NNPDF) is in the midst of kicking off activities supporting the 15th Annual October Global Niemann-Pick Disease Awareness Month!

ABOUT THE NATIONAL NIEMANN-PICK DISEASE FOUNDATION

The National Niemann-Pick Disease Foundation, Inc. (NNPDF), headquartered in Fort Atkinson, Wisconsin, is an international non-profit organization composed of parents, medical and educational professionals, relatives, friends, and others who are interested in fighting all types of Niemann-Pick disease.

In early February 1992, six families with children suffering from Niemann-Pick disease (NPD) 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. 1993 was another busy year: the Foundation's name was changed to the National Niemann-Pick Disease Foundation, Inc. to include those dealing with Niemann-Pick disease types A and B; 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. The NNPDF Web site was launched in 1997, followed by email discussion lists (listservs). Today, NNPDF's services have expanded to include:

* An annual newsletter mailed to over 6,500 households.

* An annual Family Support and Medical Conference which has grown 20-fold, with separate sessions for NPD types A and B, and type C disease groups. Top researchers attend to interact with families and share their expertise.

* Referral services and advocacy support is available to assist families across the nation with medical issues, as well as their day-to-day challenges.

* Research grants have increased from $14,583 in the first year, to $400,000 per year. To date, more than $5.6 million of NNPDF research funds have been disbursed.

The National Niemann-Pick Disease Foundation currently has nearly 450 Niemann-Pick disease families as members. Thousands of medical, corporate, professional, friend and family sponsors assist in supporting its 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 also is allied with the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF), headquartered in Durham, Ontario, Canada. The Canadian Chapter of the National Niemann-Pick Disease Foundation was founded in April 2005.

LEADERSHIP OF THE NNPDF

Leslie Hughes is the current NNPDF Board of Directors Chairperson, a voluntary position. Leslie joined the NNPDF upon the diagnosis of her great-niece, Riley May, with NPC. Riley passed away in October of 2008 at age six years. Members of the NNPDF's Board are primarily comprised of parents and family members of children or young adults affected by all types of NPD. All Board members donate their time and talents to the NNPDF on a volunteer basis. Detailed information about the current and past Board of Directors can be found at: www.nnpdf.org/aboutus_03.html

The Executive Director of the NNPDF is Nadine M. Hill. With an educational background in Business Administration with emphasis in Finance, Nadine served as operations manager within the brokerage industry for 10 years prior to her work with the Foundation. A subsequent management position with a local chapter of the American Red Cross introduced Nadine to non-profit agency work, allowing her to develop skills in community fundraising and volunteerism. Nadine joined the NNPDF in early 2001 as the first employee of the Foundation. In addition to being the Executive Director since March 2012, she also serves as Director of Family Services.

The all-volunteer NNPDF Scientific Advisory Board (SAB) members provide guidance to the NNPDF's Board of Directors in determining policies and funding decisions related to research. The wide-ranging specialties of SAB members include: pediatric neurology, genetics, physiology, biochemistry, molecular and cell biology, human nutrition, and metabolism and cholesterol trafficking. Members of the SAB also attend the annual NNPDF Family Support and Medical Conference to give presentations and update families on the latest research developments. They also give generously of their time to talk with families and answer families' questions relating to clinical and research matters. Information about current and past SAB members can be found at: www.nnpdf.org/aboutus_05.html

NNPDF SERVICES AND ACTIVITIES

Family Support and Medical Conference: The "Annual National Niemann-Pick Disease Foundation Family Support and Medical Conference" provides attendees with opportunities for in-depth education about NPD, and current research and clinical trial updates; for special outings with other NPD families; for parents to attend conference sessions worry-free while their children receive one-to-one child care provided by conference volunteers who themselves are also NPD family members; and for remembering and celebrating members of the NPD community who have died. Because of the rarity of NPD, the NPD community plays an essential role in providing supportive empathy, understanding, and practical advice that NPD families do not otherwise easily find outside the NPD community. The conference is held each year around the beginning of August. The NNPDF offers "Helping Hand Stipends" to NPD immediate family and patients, and applying for the stipend is an easy part of online conference registration.

Ongoing Family Support Services.

NNPDF's "Family Services Program" anticipates and responds to the needs of all individuals dealing with Niemann-Pick disease. The goal is to reduce the burden of Niemann-Pick disease on affected individuals and families. Ongoing services include: emotional support to individuals and families dealing with all types of Niemann-Pick disease; assistance through an acute crisis; information and ideas about issues such as doctors, clinics, insurance companies and other health and human service programs; and practical suggestions about day-to-day care of individuals dealing with Niemann-Pick disease.

NNPDF LISTSERVS

The NNPDF maintains and administers listservs (email discussion lists) for each type of the disease (NPA, NPB and NPC), which provide opportunities for discussion and sharing of concerns, problems, solutions and support for NPD families and others interested in the disease. NNPDF also sponsors a Siblings listserv.

RESEARCH GRANTS AND FELLOWSHIPS

The NNPDF and the CCNNPDF jointly fund research grants and post-doctorate fellowships.

Details about past and current research grants can be accessed by visiting: www.nnpdforgfnpresearch_05.html

Details about past and current post-doctorate fellowships can be accessed by visiting: www.nnpdf.orgfFellowshipsFunded.html

Together We Stand Strong Against Niemann-Pick Disease has been chosen as the theme to highlight family activities and NPD awareness opportunities throughout the month of October 2016. For the last 15 years, October has afforded all of our NPD families world-wide, the opportunity to raise awareness about Niemann-Pick Disease. The NPD family membership is the foundation's greatest asset and we need your help to get the word out about this rare disease to doctors, families, government leaders and to the general public. Won't you please consider taking part in this 15th annual campaign in support of your loved one diagnosed with Niemann-Pick Disease? We can't do it without you.
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Publication:The Exceptional Parent
Date:Oct 1, 2016
Words:1179
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