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A Message from Karen Quandt, NNPDF Board Chair

Winter 2010 letter from Karen Quandt, NNPDF Board Chair

Summer 2010 letter featuring Ty Quandt (NPC) and his family

Quandt family
The Quandt Family

A message from Karen Quandt, NNPDF Board Chair:

Welcome to the National Niemann-Pick Disease Foundation's Web site. If you are reading this, you are probably searching for more information about Niemann-Pick Disease. You have come to the right place. The NNPDF will provide you with accurate, up-to-date information about all types of Niemann-Pick Disease: Acid Sphingomyelinase Deficiency (ASMD, formerly called Niemann-Pick Disease Types A and B), and Niemann-Pick Disease Type C (NPC).

My son Ty was diagnosed with Niemann-Pick Disease Type C in 2005 at the age of eight. My husband Gene and I found the NNPDF Web site after Tys neurologist said Ty would be tested for NPC.  We were devastated with the possibility of Ty having NPC disease. The Web site gave us information about the disease and where we could get help and who we could call.  We used many of the resources we found. Ty is now 13 years old and we have learned a great deal about the disease and how to cope on a daily basis, thanks to the NNPDF.

Ty and our family face daily challenges in coping with this neurodegenerative disease.  We turn to the other families of the NNPDF for support and guidance because many of them have experienced the same issues with their children or family members and can share their knowledge of what has helped their family.

We also turn to the doctors and researchers of the Scientific Advisory Board (SAB) for advice about medical care, clinical research trials, experimental medications, and to help explain what research is currently being conducted around the world concerning Acid Sphingomyelinase Deficiency and Niemann-Pick Disease Type C.

As I take over the responsibilities of the Chair of the NNPDF, I am well aware that I begin this journey standing on the shoulders of giants. The foundation was formed in 1992; many resources have been established and much has been accomplished by those founding families to help other families with a Niemann-Pick diagnosis find hope and answers through the NNPDF.

The NNPDF is here to help. The Foundation provides compassionate services that reduce isolation, offers information that helps us get through each day, and provides education about the broad issues and developments that can impact affected individuals and families.  Through the Web site, our listservs, newsletter, and our knowledgeable staff, we help families learn about the basics of NPD and its treatments, tackle the complexities of genetic counseling, seek access to medical equipment, conduct fundraisers, or offer opportunities to simply talk with other affected families.

Supporting the NNPDF is a way to fight back against Niemann-Pick Disease.  Because all types of Niemann-Pick Disease are rare, it is important that all of us touched by these diseases continue to support the NNPDF so that the foundation can support our families and continue the quest for treatments or cures.  We welcome you to the NNPDF, and pledge to do our best in striving to provide the critically important services that the NNPDF has established for you.

Sincerely,

Karen Quandt, RN, MSN
NNPDF Board Chair

[Feb 10, 2010 mem]