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.

2011 NNPDF Family Conference Recap

The 2011 National Niemann-Pick Disease Foundation's Family Support and Medical Conference, held recently in Norfolk, Virginia, was a resounding success! NNPDF families from the U.S., Canada, and several other countries came together to learn the latest in research and clinical care, and to share in supporting one another along the difficult journey presented by Niemann-Pick Disease.

Members of the NNPDF board and staff extend their greatest appreciation to the many volunteers, speakers, the staff of the Sheraton Norfolk Waterside Hotel, and others who went above and beyond the call of duty to make the conference such a wonderfully enriching experience.

Photos of the conference are now available on the NNPDF Web site: www.nnpdf.org. Fun photos include many taken at the Peninsula Pilots baseball game, the Saturday evening banquet and dance, conference sessions, and informal gatherings of families and friends.

Visit our special conference page for links to the photos/slideshows. Enjoy!

10th Annual Niemann-Pick Disease October Awareness Month

2011 National Niemann-Pick Disease Awareness Month

The families of the NNPDF are gearing up for this year's October Awareness Month! Some have asked their state's governor or their city's mayor to proclaim October as NPD Awareness Month, some are planning elaborate fundraising events, and some are working up simple awareness projects.

Fundraising and awareness can be as easy as setting up a table at the high school football game, handing out brochures and newsletters, or selling PERSEVERE wristbands for $1 each.

Remember -- awareness drives donations, donations drive research, and essential research will find effective treatments and a cure for Niemann-Pick Disease!

Please consider what you, together with the help of your family and friends, can do to help raise awareness and funding during this October Niemann-Pick Disease Awareness Month!

Visit our October Awareness Month page to see what projects our families conducted during last year's Awareness Month -- you may find an idea that works for you. We will begin posting this year's October Awareness projects and events soon, so please be sure to let us know what you're "cooking up."

We are also happy to help you with ideas, press releases, "best practices," and much more. Please contact us and let us know how we can be of assistance!

Thank you for your support!

--------------------------------------------------------------------------------

NPC Research Updates

Research into Niemann-Pick Disease Type C (NPC) is moving forward with some exciting findings through work being done by the eminent experts in the field.

Many scientists and physicians gave reports and updates at the recent 2011 Scientific Conference on NPC, hosted by the Notre Dame College of Science, and two new studies have been recently published (principal authors Dr. Steve Sturley and Dr. Fred Maxfield) on the potential use of HDAC inhibition for NPC.

Please visit the National Niemann-Pick Disease Foundation's Latest Research page for more information.

For more information about Niemann-Pick Disease of all types, visit http://www.nnpdf.org/.