11-11-11 Challenge Great Success! Contest Winners Announced

The NNPDF's 11-11-11 Challenge was a resounding success, raising awareness of Niemann-Pick Disease of all types, bringing in over $20,000 in funds dedicated to essential NPD research!

The NNPDF's Board of Directors extends sincere thanks to the 35+ families who took on the 11-11-11 Challenge, asking their friends, families, neighbors and co-workers to each donate $11 to the cause.

We were amazed and grateful for the creativity and perseverance shown by our families and other supporters during the Challenge -- awareness videos, photo collages, Facebook pages, blogs, personal letters, face-to-face appeals, etc., all added up to the tremendous success of this group effort!

We also want to thank the hundreds of donors who each gave $11 and the many who gave larger amounts to help advance our Quest for a Cure!

The Bourgeault family of Charlotte, North Carolina, was the top fundraiser for Niemann-Pick Disease due to ASMD (Types A and B), conducting their challenge in honor of little Kaitlyn Bourgeault (NPA). Meghan Roberts of Massachusetts was the top fundraiser for Niemann-Pick Disease Type C (NPC), raising funds in memory of her cousin, Erin Roberts (NPC). Each winner will receive a $100 gift card to a national retailer.

More about the NNPDF's 11-11-11 Challenge

Melana Marie Elfe (1976 - 2011)

Melana Marie Elfe
6/18/76 - 11/5/11

We have received very sad news that Melana Marie Elfe has passed away due to the effects of Niemann-Pick Disease Type C. Her final days were spent surrounded by family and friends.

Melana's life would seem too short to many, but those who were touched by her understood that the quality of existence far exceeds the quantity of time in which one lives. Her big smile, strong will and caring personally will be missed by family and friends. Family was the most important thing in Melana's life, always placing family before her own needs. Melana enjoyed reading, travelling, and big family meals.

Melana held a degree in Child Care Development and she loved taking care of children of all ages. She also served in the Army as a Supply Specialist for 3 years including time overseas.

Melana is survived by her loving son, Allan Elfe Jr.; husband Allan Elfe Sr.; parents Gene and Margaret Steele; grandmother Betty Luttrell; and other caring family members.

Melana's family thanks the Denver North Care Facility for the excellent care they provided during her declining health issues.

A Celebration of Life service was held on Friday, November 11, 2011, at Mountain View Mortuary, Colorado Springs, Colorado.

The family requests that memorials be made to the National Niemann-Pick Disease Foundation (NNPDF).

Daniel J. Flinton (2006 - 2011)

Daniel Jonathon Flinton (NPC)
12/7/2006 - 11/11/2011

We've received the heartbreaking news that Daniel Jonathon Flinton has passed away due to Niemann-Pick Disease Type C (NPC).

Daniel was the beloved son of Jill and Faron Jon Flinton of Charlton, New York. Born on Pearl Harbor Day, Daniel died on Veterans Day. He was almost five years old.

Service information will be posted to the NNPDF Web site's NewsLine page when it becomes available.

Our deepest sympathy goes out to Daniel's family at this very difficult time.

Niemann-Pick Research Updates - Cyclodextrin Trial and Postdoc Fellowships

We have received an update on the planning for a clinical trial with cyclodextrin for patients with Niemann-Pick Disease Type C (NPC).

Please visit the NNPDF's Cyclodextrin Trial page for a link to the complete update.

A photo of members of the NPC team at NIH is above.

In other research news, progress reports have been received from the postdoctoral fellows sponsored by the NNPDF. Visit the NNPDF's Fellowships page for links to the updates.

Three More Lives Lost to Niemann-Pick Disease

We are deeply saddened to pass along news of three more recent deaths due to Niemann-Pick Disease.

Stephanie Francis Lawrence (above, left), age 24, of London, Ontario, Canada, passed away on October 9, due to the effects of Niemann-Pick Disease Type C (NPC). Mia Walts (above, center), passed away October 29, due to Niemann-Pick Disease Type A (NPA). And Gavin Lopez (above, right), age 7, of Little Elm, Texas, passed away October 30, due to NPC.

Our heartfelt condolences go out to the families and friends of these young people at this very difficult time.

For more information visit the National Niemann-Pick Disease Web site's NewsLine page.

Becky McGuire Joins NNPDF Board of Directors

The National Niemann-Pick Disease Foundation is pleased to welcome Becky McGuire as a new member of the NNPDF Board of Directors. Becky is the cousin of Kelly Thompson (NPC), and has been active in fundraising and awareness activities for several years.

Visit the NNPDF's Meet the NNPDF Board page for more information about the foundation's board members and activities.

Take the 11-11-11 Challenge to Support the NNPDF!

November 11, 2011, presents a unique opportunity to raise awareness and funding for Niemann-Pick Disease. Thus, we are announcing to all our families, friends and supporters…

The National Niemann-Pick Disease Foundation’s 11-11-11 Challenge!

Through October, Niemann-Pick Disease Awareness Month, right up until 11-11-11, we are asking you to reach out to your contacts, asking them for their support in our urgent Quest for a Cure for Niemann-Pick Disease.

To mark 11-11-11, we want you to ask your family, friends and co-workers to each donate $11 to the NNPDF.

These modest donations, added up, could give a significant boost to the foundation’s 2011 revenue goals. After all, who should be more willing to support this cause than the close family and friends who see on a daily basis the heartbreaks and struggles a family faces due to NPD?

Our goal for the “11-11-11 Challenge” is to get 111 people to get 11 of their contacts to each donate $11. This would ultimately add up to over $13,000 to be dedicated to research, designated by NPD type!

Further, we ask that you encourage your contacts to forward the “11-11-11 Challenge” on to their friends and families, spreading awareness of NPD and the plight faced by families who receive this diagnosis even further.

The top two fundraisers (one for NPC, one for ASMD/Types A & B) will receive a prize in the form of a $100 gift certificate to a national retailer. Visit the NNPDF's 11-11-11 Challenge page and the October Awareness page for more information.