Living with the certainty of a child's gradual decline and death
creates an emotional burden too difficult to bear alone. There is
little that can make the situation easier. However, contact with
other parents can reduce the feelings of isolation that can contribute
to despair. The National NPD Foundation hopes to:
Give and receive emotional support;
Provide assistance through a crisis;
Share resources and ideas about such issues as doctors, clinics,
insurance companies and other health and human service programs;
Provide each other with practical suggestions about day-to-day care
for our children;
Establish enduring relationships with others who, on a personal
level, understand both the anguish and the recovery of being a parent of
a dying child.
Specifically, our ongoing Family Support services include:
NNPDF Newsletter and Family Support Newsletter - The NNPDF Newsletter is sent to everyone on our mailing list three times a year. The Family Support Newsletter is sent twice a year to all NPD families and to those extended family members who specifically request it.
Annual Family Conference - the Family Conference brings together families, researchers, and medical professionals to share information and support each other. Conferences have been held every year since 1992.
Support Packets - information about the disease and support resources for Niemann-Pick families. You can request Support Packets via email
NP Coordinator - Cate Walsh-Volkley, MS, CGC is available to discuss the various aspects of Niemann-Pick with families and medical professionals. Cate is a certified genetic counselor and has worked with NP families for many years at the Mayo Clinic and University of Pittsburgh.
Electronic Mailing List - email discussions of concerns, problems, and solutions for Niemann-Pick families and others interested in the disease. There is a general Support List plus a Siblings List and an NP Type B list.
Family Directory - contact other NNPDF member families
(The Family Directory is only available to NNPDF members and only includes families who have given permission to be listed).
Website - with current information on the Foundation, research, and events
Online Stores - books, toys, and adaptive aids which may be helpful are featured from a variety of sources. Niemann-Pick awareness items are also available.
Educational initiative - the Foundation provides mailings of medical and educational information to assist in the correct diagnosis and referral of people with NPD to schools, doctors and other health-care professionals.
All of the Family Support Services provided by the Foundation are the result of members volunteer actitivities, membership dues, fund raising, and limited grants from private companies. You can help continue our Family Support Services by becoming a member of the Foundation.
