Monday, October 25, 2010

Online Auction for Niemann-Pick Disease

The NNPDF’s Online Auction has something for everyone!
Get a jump on holiday gift shopping, while benefiting research and support services for families battling Niemann-Pick Disease.

The auction offers a full array of exciting items, with all proceeds to advance our Quest for a Cure! Pictured is just a small sampling of the items you’ll find there.

The NNPDF Online Auction is accepting bids up until midnight October 31st. Many new items have been added recently, with items ranging in value from $10 to fabulous trips worth several thousand dollars -- something for every budget and some real “steals” to be snapped up -- gourmet foods, sporting event tickets, “Persevere” clothing, autographed memorabilia, handmade crafts, jewelry, travel, artwork, etc.

Your participation is key to our success. Please help us raise funds to advance research for a cure and to provide important support services for our families!

Please don’t hesitate to contact us if you have any questions or need further information about the October Awareness Online Auction or about Niemann-Pick Disease. Visit the NNPDF at

Thursday, October 14, 2010

Institute of Medicine Releases Report on Rare Diseases

The Institute of Medicine (IOM) recently released a report calling for implementing an integrated national strategy to promote rare diseases research and product development.

The report, Rare Diseases and Orphan Products: Accelerating Research and Development, is the result of a two-year study commissioned by the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).

To read the full report, visit the NNPDF's Latest Research page and click the link.

Thursday, October 7, 2010

One Child's Journey through Niemann-Pick Disease

One Child’s Story Through Niemann-Pick Disease Type C

Stacey Lynne Vorpahl (NPC)
January 3, 1985 – October 9, 2004

In loving memory of Stacey and all the other precious children lost to NPD, and in honor of those still struggling, please join with us in our Quest for a Cure. Follow the link to view Stacey's story, as told by her parents in text and photos.

10 – 10 – 10 Challenge
Please Help Raise Awareness for Niemann-Pick Disease

Meet the NNPDF's 10-10-10 Challenge and take at least one simple action on October 10,2010, to spread the word about this devastating disease.

Thank you for your help and support, on 10-10-10 and always!

Tuesday, October 5, 2010

2011 Puppies Calendar Now Available!

Get ready for 2011 with the latest edition of the darling Puppies Calendar, "Treasuring Each Day!"

Featuring playful puppies and sayings of inspiration and hope, this very special wall calendar is dedicated to the children and families who struggle every day with the challenges of Niemann-Pick Disease (NPD).

Get a jump on your holiday shopping by ordering ten calendars on 10-10-10, supporting the NNPDF's program of research and important Family Support Services at the same time!

Your purchase of these calendars gives hope to families affected by NPD as funds are raised for essential research into treatments and a cure. Turning the page each month, we are reminded that we are in a race against time to find treatments and a cure for all children and adults with NPD.

NNPDF member Lorna Tyrrell created the Puppies Calendars in honor of their seven-year-old daughter (who loves puppies and bunnies and all things cuddly!), Naomi (NPC). Please order calendars directly from the Tyrrells using the order form available here.

Thank you for your support of all those affected by Niemann-Pick Disease, on 10-10-10 and every day!

Friday, October 1, 2010

Take the 10-10-10 Niemann-Pick Disease Challenge!

Intriguing dates such as 10/10/10 don’t come around all that often, and it seems fitting to proactively observe this once-in-a-lifetime occasion, especially since it falls during October National Niemann-Pick Disease Awareness Month!

Participating in the NNPDF Central Office Challenge and showing support for the many families coping with Niemann-Pick Disease is one simple way you can mark the day by making a positive difference. With just a few minutes of your time, you can help raise awareness and funding for all whose lives are affected and cut short by Niemann-Pick Disease.

Our 10-10-10 Challenge is to get 300 people to share information about Niemann-Pick Disease with 10 other people, via email, Facebook, Twitter, or other means (even via the hospitable old-fashioned way, face-to-face!).

Spreading the word about this rare disease is key to raising the essential funding for research which will find the treatments and cure we all work fervently toward, and to providing important family services for those who rely on us. Please, will you help us meet our goal? Click here for six easy ways you can help us meet this October Awareness Month challenge!

One decidedly FUN way to participate in October Niemann-Pick Disease Awareness Month is to shop the Online Auction! Bidding is now open! Bid high, bid often!

It's also not too late to donate items to the auction. Check out this page for more details, or contact the NNPDF Central Office.

As always, Thank You most sincerely for the continued love and support you give the families who deal with the challenges and heartbreak of Niemann-Pick Disease!