A Message from Barb Vorpahl, NNPDF Board Chair

I’m excited to welcome you to NNPDF’s new web site.  I’m also very pleased to be back again as Chair of the NNPDF as we celebrate our 15th anniversary.  My husband Gary and I were one of the founding families of the NNPDF. Through the years, I have served in all capacities of the foundation, residing as Chair from 2000 through 2004. Our family started our battle against Niemann-Pick Disease when our daughter Stacey was diagnosed at age two. Stacey died two years ago, at the age of nineteen, after a long courageous struggle from the effects of Niemann-Pick type C disease.

We know first hand the daily challenges of this disease, and realize it was the support of the many family and friends we have met through the NNPDF that got us through.  As parents watching a child decline before our eyes, it was the NNPDF that empowered us to stand up and do something to fight this disease by raising funds to find a cure. 

As we face life without Stacey, I realize even more the importance of the NNPDF and I am committed as Chair to carrying out the Foundation’s mission and purpose…. to promote research to find treatments and a cure for NPD, and to provide support to anyone – individuals, families, communities, and organizations – affected by this disease.

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 this web site, our list-servs, newsletter, and our highly trained 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 fund raisers, or offer opportunities to simply talk with other affected families. 

We also offer hope through research. NNPDF is committed to funding the science to find a cure (see the Niemann-Pick Research page to learn about a major new study that NNPDF has funded in the UK).  But research takes time and a cure, especially for NPC, is not yet available.  That’s why it is so vital that we continue to seek financial support to back all of NNPDF's efforts. 

Please spend a few minutes to surf our new web site and let us know what you think.  We’ve tried to make it easier for you learn about Niemann-Pick disease and to access the wealth of information that is available to help those affected by NPD. 

We’re grateful for your continuing support and we’ll thank you personally if you will join us at the Family Conference in August (see the web site under Family Services).  And we’ll continue to provide the critically important services that you have come to rely upon from NNPDF.

Barb

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