From: National Niemann-Pick Disease Foundation [nnpdf@nnpdf.org]

Sent: Friday, April 30, 2010 5:02 PM

To: nnpdf@nnpdf.org

Subject: NNPDF Spring 2010 eNews

Spring has sprung!
The sun is brighter, the sky is bluer, everything is greening up and growing again. Spring is a time of new beginnings and a time for a fresh outlook. Please join us in a renewal of our commitment to Persevere in our fight against Niemann-Pick Disease!

18th Annual National Niemann-Pick Disease
Family Support and Medical Conference
August 5th - 8th, 2010
Toronto, Ontario Canada

Plans are underway for the 18th Annual National Niemann-Pick Disease Family Support and Medical Conference scheduled for August 5-8, 2010. This year's conference will be hosted by our good neighbors to the north, the Canadian Chapter of the National Niemann-Pick Disease Foundation, as the first international Niemann-Pick Disease support conference.

Families should start making their plans now to join us at the elegant Delta Chelsea Hotel in Toronto for an educational and fun-filled event, packed with all the latest research and information families need as they meet the day-to-day challenges of NPD, and opportunities to build lasting friendships and support with others who truly understand.

Details and registration forms are available on the Family Conference page at the NNPDF Web site. Registration packets will also be mailed out to member families in May.

Please note: Families traveling to Toronto from outside Canada, including the U.S., will need passports. Visit the U.S. Dept of State's site for more information.

Zavesca Receives Canadian Approval for Use in Niemann-Pick Type C
U.S. FDA Stops Short of Approval

Health Canada recently announced its approval of the drug Zavesca (miglustat) at the first authorized treatment for neurological symptoms of the rare, genetic and terminal condition, Niemann-Pick Type C (NPC).

Zavesca is not a cure for NPC, but it has shown promise in treating symptoms and slowing the progression of the disease for some patients. Zavesca provides a ray of hope for families who are desperate to extend and improve the quality of life for their children with NPC.

In addition to Canada, Zavesca has been approved for NPC in the European Union, South Korea, Brazil, Russia and Australia.

Unfortunately, the U.S. Food and Drug Administration (FDA) did not give the same approval, issuing instead a "Complete Response Letter" to Actelion Pharmaceuticals, maker of Zavesca. This allows Actelion to continue to collect and submit data which might more clearly show the positive impact the drug has on patients with NPC.

Help Us Raise Awareness of Niemann-Pick Disease!

As spring unfurls her greenness and new growth, we renew our commitment to beating Niemann-Pick Disease, whatever it takes! Please help us raise awareness and funds for essential research.

We have many items with our motto of "Persevere" to raise awareness of NPD. We have the popular silicon sports wristbands, Persevere wear (t-shirts, hoodies, etc.), reusable shopping bags, and colorful vinyl banners that can be personalized with a name and the NNPDF rainbow "swoosh."

Please visit the NNDPF Store for these and many other items to help us advance the battle against NPD. If you would like to organize a fundraising or awareness event, visit our Upcoming Events and Recent Events pages for some great event ideas.

We can help you with brainstorming, "best practices," and press releases. Contact us and we'll be happy to help you get started!

As part of

Please Donate to Our Online Auction

As part of October Niemann-Pick Disease Awareness Month, we will be expanding our nationwide online auction. Please consider what you might donate to raise funds for research and family services. (Please do not send donated items to the foundation -- items will be shipped directly to the auction winner.)

Items sure to be popular on the auction include handmade craft and gift items, sports memorabilia and collectors' items, and gift certificates to national chain restaurants, retailers and service providers.

As a special feature of the auction, we are asking families to coordinate and donate to special "state-themed" auction packages or baskets -- What makes YOUR state unique? Please let us know your ideas and if you have items to donate for these state collections which are sure to be hot items on the auction block!

Sign up for RSS Feeds or subscribe to our new blog at http://www.nnpdf.org/ .

Thank you for your continued support in the fight against NPD!

The NNPDF is a non-profit 501(c)(3) corporation and your gift is fully
tax-deductible. Tax ID # 35-1844264

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National Niemann-Pick Disease Foundation
P.O. Box 49; 401 Madison Avenue, Suite B
Fort Atkinson, WI 53538

Tele:920-563-0930;Toll-Free: 877-287-3672

Email: nnpdf@nnpdf.org

Web Site: http://www.nnpdf.org/

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