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.

Urgent Equipment Request
Motion Table Needed






One of our NNPDF member families has immediate need of a Motion Table with Vibra-Glide, any condition.

"The Motion Table improves the results of therapy sessions and home programming by organizing the nervous system and allowing the user to respond appropriately to the given stimuli. By stimulating the vestibular system, The Motion Table is able to "level out" extreme behaviors caused by a variety of conditions."
http://www.redbarn-enter.com/newmotiontable.htm

Please contact the NNPDF if you have this equipment to share. Thank you!

Research Into Ebola and ALS Hold Interest for NPC Research

Two recent publications from researchers based at MIT and Harvard report that the NPC1 protein is an essential factor in allowing infection by the deadly Ebola virus. The MIT team lead by Brummelkamp et al. used a genetic screen to identify mutant cells that were unable to support Ebola infection. They identified a panel of genes related to uptake into endosomes, most notably NPC1.

Cunningham and colleagues at Harvard used small molecule inhibitors to prevent Ebola infection, and in collaboration with Dan Ory at Washington University, demonstrated that the inhibitors were disrupting interaction between a viral protein and NPC1. These findings lay the groundwork for development of new drugs to prevent Ebola infection. The studies will spur further interest in the NPC1 protein, and could lead to new insights into its function.

Also, Northwestern University recently reported on a major breakthrough in research on Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. The findings could have ramifications for future research into Niemann-Pick Disease as well as other diseases with elements of dementia.

For links to more information about these research findings, visit the NNPDF's Latest Research Web page.