Friday, March 23, 2012

Kaitlyn Kay Bourgeault

Kaitlyn Kay Bourgeault (NPA)
7/1/09 - 3/22/12

With heavy hearts, we share the news that Kaitlyn Kay Bourgeault, the daughter of Deanna and Chip Bourgeault of Indian Trail, North Carolina, passed away due to the effects of Niemann-Pick Disease Type A (Acid Sphingomyelinase Deficiency or ASMD).

Kaitlyn and her family have touched and inspired so many with their strong faith and the support of their loving community, sharing their story and poignant photos through their family's blog, Kaitlyn's Korner.

For service information, visit the NNPDF's NewsLine page.

The family has asked that in lieu of flowers, donations may be made to the NNPDF in Kaitlyn's name.

Our deepest sympathy goes out to Chip and Deanna, and all of Kaitlyn's family and many friends.

Tuesday, March 20, 2012

Adelaida Kay Van Meter

Adelaida Kay Van Meter (NPA)
6/13/10 - 2/29/12

We are very sad to report that we have received word of the death of little Adelaida Kay Van Meter, at the age of 20 months, due to Acid Sphingomyelinase Deficiency (ASMD), i.e., Niemann-Pick Disease Type A.

The daughter of Murro Van Meter and Sophia Fox of Massachusetts, "Adelaida loved everyone and everything," writes her mom. "She especially loved singing songs, baby dolls, reading books, and going on adventures. No one ever told Adelaida she wasn’t supposed to be the happiest little girl in the world! Her vibrant personality brought joy to the lives of her family and friends. Adelaida was an old soul. Words cannot express how she will be missed. There will be an enormous emptiness for a long time."

To read and see more about Adelaida's beautiful, too-short life, read the March 11 post at the Bourgeault family's blog, Kaitlyn's Korner. For more information about Niemann-Pick Disease Type A, visit

Our deepest sympathy goes out to Adelaida's family and friends in their loss.

Friday, March 16, 2012

NNPDF 20th Anniversary - 1992 - 2012

This year, the National Niemann-Pick Disease Foundation will mark 20 years of providing services to families affected by NPD, and raising awareness and funding for research into the causes and treatment of NPD.

Though we all wish there was no need for an organization dealing with the heartbreaking disease that is Niemann-Pick, the reality is, that until there are effective treatments and a cure, the need is great, and the NNPDF can be proud of all that it has achieved in the fight against NPD.

To learn more about the history of the NNPDF and the progress made since it was established, and how you can join in the recognition of this milestone, visit our special NNPDF 20th Anniversary page.

Friday, March 9, 2012

Edward H. Schuchman Research Fellowship - Request for Applications

The National Niemann-Pick Disease Foundation is pleased to announce a request for applications for the 2012 Edward H. Schuchman Research Fellowship, examining the biology of Acid Sphingomyelinase Deficiency (ASMD; i.e., Types A and B Niemann-Pick Disease).

M.D., Ph.D., and/or D.V.M. postdoctoral fellows are eligible to apply for funding to improve our understanding of the biology and pathogenesis of Acid Sphingomyelinase Deficiency (ASMD; i.e., Types A and B Niemann-Pick Disease).

Preference will be given to research projects developing new therapies for ASMD, and for identifying biomarkers to improve diagnosis or to monitor disease progression and efficacy in clinical trials.

The fellowship provides support of $40,000 per annum for two years and may be renewable based on performance. Applicants must be currently associated with a recognized laboratory.

These fellowships are named for Edward H. Schuchman, Ph.D. a pioneer in ASMD research, and supporter of the NNPDF.

Applications are due May 1, 2012, and the fellowship will begin September 1, 2012. Visit the NNPDF's Web site for more information and application procedures.