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This
website was updated on: April 17, 2009 |
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Welcome to the National Niemann-Pick Disease Foundation Website
Promoting Research & Supporting Families
The National Niemann-Pick Disease
Foundation supports and promotes research to find treatments
and a cure for all types of Niemann-Pick Disease, and
provides support services for individuals and families
affected by NPD. Our Vision...is
a world where Niemann-Pick Disease is no longer a threat
to a full and productive life for patients and their
families. The NNPDF is a non-profit 501(c)(3) organization. Donations are fully tax-deductible.
A message from Barb Vorpahl, NNPDF Chair
Niemann-Pick Disease Featured on CBS National News
Mark and Darrile Papier with their son, Dillon (NPC ~ age 6))
Niemann-Pick Disease was the subject of a CBS News segment which aired March 1st, 2009, featuring the Papier family of Frederick, Maryland.
Mark and Darrile Papier are the parents of Dillon, age 6, who is affected by Niemann-Pick Type C. The Papiers are members of the NNPDF, and Darrile recently joined the Foundation’s Board of Directors.
Read more about Dillon Papier and the Papier family's ongoing efforts toward funding of research into a treatment for Niemann-Pick Type C Disease.
Niemann-Pick Disease Featured in
The Wall Street Journal
and on
Good Morning America
Chris Hempel, with her daughters Addi and Cassi (NPC ~ age 5)
Niemann-Pick Disease is the subject of an April 3rd Wall Street Journal article, titled: "A Mom Brokers Treatment for Her Twins' Fatal Illness," and a segment on Good Morning America on April 20. The article and tv segment feature the diligent efforts of Chris Hempel, of Reno, Nevada.
Chris and Hugh Hempel are the parents of 5-year old identical twins, Addi and Cassi, who are affected by Niemann-Pick Disease Type C. Due to her tenacity, research is moving forward as she searches for an effective treatment for her precious little girls.
Watch the NNPDF Newsline and check back frequently for additional stories and updates on the efforts of the Hempel family and other NNPDF families highlighting their work on behalf of their loved ones affected by Niemann-Pick Disease.
Stay informed via these NNPDF website updates and announcements.
Foundation News:
Research News & Announcements:
Family Resources & Support:
“The National Niemann-Pick Disease Foundation (NNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.”
This site does not host or receive funding from advertising or from the display of commercial content.
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The National Niemann-Pick Disease Foundation is a 501(c)(3) organization. Your donations are fully tax-deductible. |
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NNPDF 17th Annual
Family Support & Medical Conference
July 30 - Aug 2, 2009
Seattle, Washington
Mayo Clinic Podcast Featuring
Dr. Marc Patterson
speaking about
Niemann-Pick Disease Type C.
Expression of Hope is a global program featuring works of art by the community touched by lysosomal storage disorders (LSDs). Our vision is that those who experience this art will be inspired and moved by the powerful expressions of human spirit which the pieces will reveal. People living with LSDs, or caregivers around the world, are invited to submit artwork which shares their feelings of hope and expresses their innermost essence.
www.expressionofhope.com
(Click any place in the box above to view the
video for "And This My Child")
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