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!

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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.

October is Niemann-Pick Disease Awareness Month!

October is the time to raise awareness about Niemann-Pick Disease!

We need to get the word out about this rare disease to doctors, families, government leaders and the general public.

We invite and encourage each family to look within their family structure, friends and community support networks to create their own team and sponsor an awareness campaign and/or fundraising event during October 2010.

The NNPDF has a wealth of experience and resources to support you in any fundraising/awareness project you'd like to undertake, from a simple "Persevere" wristband sale or a "Family and Friends" letter, up to an all-out gala or golf tournament. Take a look at what other NNPDF families are cooking up for October.

One easy and effective way to support the foundation's goals of research into treatments and a cure, and to support families affected by Niemann-Pick Disease, is to participate in this October's Online Auction as a donor and/or a buyer.

It’s a win-win-win situation – the winning bidder gets a great deal on something they like with the added satisfaction of knowing their money is supporting a favorite cause, while the donor has a great feeling knowing their gift will go far to help families affected by NPD. Best of all, the NNPDF is able to use the proceeds to diligently advance our mutual Quest for a Cure!

There are three ways you can help us make this auction a big success: donate an item(s) for auction; bid on auction items; and spread the word to all your family and friends so they can bid, too! (Please visit our Web site for all the details.)

We are busy getting our auction site set up so you can start to "window shop" the items up for sale. Please check the foundation's Online Auction Web page next week for a link to the auction itself. And we hope to hear from you soon regarding what you might be able to donate for this exciting new fundraising opportunity!

As always, Thank You for your continued support! Together, we can make a difference!

NNPDF Families Working to Raise Awareness and Find a Cure

The summer fundraising season is upon us, and many NNPDF families are pulling out all the stops to raise awareness and funds for the fight against Niemann-Pick Disease.

Of course, many of our families do fundraising year-round, but the warmer weather lends itself to many types of outdoor fundraisers that bring out the crowds looking for something fun to do while supporting a worthy cause.

This Saturday, June 19, golfers will compete in the Alex and Laura Vaughan Memorial Golf Tournament in Durham, Ontario, to benefit the Canadian Chapter of the NNPDF. Next Friday, June 25, an Evening of Jazz in Vaughan, Ontario, will benefit the Life for Luke (Liegghio) Foundation.

The weekend of June 26-27 will see four events benefitting the NNPDF. Saturday, June 26, is the date for this year's Hanover (Massachusetts) 5K Road Race in memory of Erin Roberts, as well as the Golf "FORE" Stacey (Vorpahl) Memorial Classic event in Cold Spring, Wisconsin.

On Sunday, June 27, the Perugini family will host the Marcello and Matthew Perugini Memorial Walk (Waterbury, Connecticut), and Annie OConnor-Smith's husband, Mike, will compete in the Ironman Triathlon in Coeur d'Alene, Idaho.

Thank you to all our NNPDF families, friends and supporters, who organize, donate and participate in these events to raise funding for essential research and to provide all-important family support services!

More events are scheduled around the nation for the coming weeks. Visit the NNPDF Web site's Upcoming Events page for all the details.

One final note -- as many are celebrating graduations around the country, the Naugatuck, Connecticut, High School lovingly dedicated their 2010 yearbook to the memory of Bryanna DeSouza (NPC), who would have graduated this year. Visit the NNPDF's Recent Events page for the complete posting.

Ironman Competitor to Raise Funds for Niemann-Pick Disease!

Ironman Mike Smith of Florida will compete in the Ford Ironman Triathlon in Coeur d'Alene (Idaho)on Sunday, June 27, to raise money and awareness for the National Niemann-Pick Disease Foundation.

The triathlon is the ultimate test of strength, endurance and determination, consisting of swimming 2.4 miles, biking 112 miles, and running 26.2 miles. An Ironman certainly embodies the NNPDF motto -- "Persevere!"

Mike's fundraising goal is $3,000 and he hopes to raise enough to qualify for a Janus matching fund donation, as well. Visit Mike's page to make a donation and read more about his motivation -- his vivacious wife, Annie OConnor-Smith, who is affected by Niemann-Pick Disease Type B.

Visit the National Niemann-Pick Disease Foundation's Web site to learn more about Niemann-Pick Disease and how you can help advance our Quest for a Cure!