Thursday, May 19, 2011

Niemann-Pick Disease Research News

Here are several updates regarding Niemann-Pick Disease research:

Sandra Cowie, OT, Director-at-Large for the NNPDF, attended the 2011 WORLD Symposium in February. She reports that there were five sessions dealing with Niemann-Pick Disease (four on NPC and one on ASMD), and a poster presentations display area.

Ian Williams, Ph.D., attended the renowned Gordon Research Conference on lysosomal diseases. Dr. Williams is one of our NNPDF-funded postdoctoral fellows working on a research project titled Neurobiology of Purkinje Cells in NPC1.

We also have available a text document of the NPC updates presented during the May 2nd conference call/Webinar. Anyone who was not able to participate in the meeting, and those who would like to review the information presented, may want to access the PDF of that document. A recording of the meeting is also available for a limited time.

Please visit the NNPDF's Latest Research page for links to all the reports and resources mentioned above.

Thank you, Sandy and Drs. Williams, Ory, Porter, Patterson and Austin, for participating in these important updates for our families!

Monday, May 16, 2011

Spring/Summer is Fundraising and Awareness Time!

The busy spring and summer fundraising and awareness-raising season is now in full swing! Warmer weather is peak time for outdoor events, festivals, community gatherings, and other opportunities to advance the mission and vision of the National Niemann-Pick Disease Foundation, on behalf of all affected by NPD.

Check out our Upcoming Events and Recent Events pages for a taste of all the great activities going on around the country in support of Niemann-Pick Disease Research and NNPDF Family Services programs.

As just one example, the photo above shows the motorcycle being taken around to various events in Florida, to be raffled off to raise funds in memory of little Ryan Richardson (NPC).

If you've never done any fundraising, or if it's been a few years since you held an event, now is the time! Check out the postdoctoral fellowship research projects the NNPDF is currently supporting for some motivation, and let us help you get started in your community.

We can provide brochures (ASMD Type A/B brochures or Type C brochures, all updated in 2010), newsletters and (NEW!) posters for your fundraising needs.

The ever-popular periwinkle PERSEVERE wristbands are an easy way to raise funds and awareness. Packaged individually, each wristband contains a message of appreciation for supporting our Quest for a Cure. Wristbands are $1.00 each and can be sold with minimal effort at any event, or at the checkout counters of supportive local businesses.

One of our member families makes colorful, eye-catching vinyl banners to bring attention to your booth or event. And we can help you with ideas, best practices, press releases, or with requests for official proclamations.

Thank You to all the families, extended families and community members who support the important work of the NNPDF! Visit our NewsLine page for more details about the above ideas, and please let us know how we can be of assistance.

Friday, May 6, 2011

Happy Mother's Day

Although the dates may differ from country to country, Mother's Day is celebrated all over the world, giving us the opportunity to honor those who have loved us from before we were even born.

Mother's Day is a wonderful occasion to pay tribute to not only mothers, but any of those women who have had a great impact on our lives -- a person whose love and care knows no boundaries, a person who does everything to keep her children safe, happy and secure in the knowledge they are loved.

Happy Mother's Day and {{{{HUGS}}}} to all our loving and beloved moms, grandmas, aunts and "honorary moms" who make our lives so warm and rich!

(And belated Happy Mum's Day to our friends in the UK, who celebrated last month.)