June 2014 NNPDF e-Newsletter!

Dear NNPDF Families & Friends,

The June 2014 NNPDF e-Newsletter now available! Highlights include:

- Online registration for the family conference! 

- Summer 2014 Fundraising! 

- NNPDF Newsline

View the June 2014 e-Newsletter: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1211518

Genzyme - Enzyme Replacement Therapy (ERT) Clinical 1b Phase Trial Update

Dear NNPDF Families and friends,

The NNPDF Central Offices received the following update from Genzyme (a Sanofi Company) in reference to the current Enzyme Replacement Therapy clinical 1b phase trial provided on June 13th, 2014.

Please visit the Enzyme Replacement Therapy page on the website for the full update: http://www.nnpdf.org/npresearch_11.html#Jun1614

Happy Father's Day Greetings from the NNPDF!

Dear NNPDF Families & Friends,

This Sunday, our NNPDF families will gather together with their loved ones to celebrate their Dad's and to honor them for the enduring love and spirited care which they provide for cherished children.

To all of our special super Dad's in the NNPDF community, we wish you a day filled with the delightful memories and unending joys of your children and loved ones. For all you do and continue to do, you are truly unsung heroes today and all year long.

Happiest of Father ’s Day Greetings to you All!

NEW ~ Searching the NNPDF Web Site with Google!

In the current trend of finding better ways to communicate with our community, we've recently replaced our old Pico web site search engine in favor of Google Search!

This will allow you to locate specific topics and terms indexed on our web site, making your search for information faster and easier than before!

Visit the Newsline for the instructions: http://www.nnpdf.org/NewsLinePage.html#Search

Father's Day Shopping with the NNPDF!

Dear NNPDF Families and Friends,

Don't let your Dad be tied down by another crazy tie this year that may end up as a funky quilt next year! Break the pattern by shopping for a unique gift item that will give back to the NNPDF as well!

We have made it easy for you! Our selection of participating stores via Goodshop, iGive and Amazon Smile are larger than before, which means that a percentage of your Father's Day purchase will directly benefit the foundation just by shopping at your favorite stores online! 

Visit the NNPDF Store today to get a gift he'll not only love, but will keep on giving: http://www.nnpdf.org/store.html#iGive

USA Today Article - Coppola Remains Positive While Battling Genetic Disease

David Coppola (NPC)

Dear NNPDF Families and Friends,

With great thanks to the collective efforts of our Niemann-Pick Disease families and community, David Coppola, (Age 18 yrs ~ NPC), was able to garner the runner up position with 277,117 votes in the 2014 National Guard Inspiration contest. One writer at USA Today High School Sports, Adam Lazarus, found his story so inspirational that he followed up the contest with an article which appeared in the high school sports section of USA Today this week.

Visit the Newsline to view the article: http://www.nnpdf.org/NewsLinePage.html#Coppola

Congratulations again David ~ you are true winner in our books and an inspiration to us all!

The NNPDF Central Office Staff

NNPDF May 2014 e-Newsletter

Dear NNPDF Families and Friends,

Here's the e-Newsletter you've all been waiting for! Highlights include:

• Family Conference hotel registration, Family registration form and helping hand stipend now online!
• Family Conference tentative agenda, important dates and deadlines.
• Meet Lee Ann Keener, Clinical Nurse at the National Institutes of Health!
• Current Research Updates from: 

• Dorthea Maetzel, Ph.D. 
• Charles Vite, D.V.M., Ph.D
• Stephanie Cologna, Ph.D. 
• Lluis Samaranch Gusi, Ph.D. 
• Andrew Munkacsi, Ph.D.
• Rare Disease Research ~ Clinical Trial for Niemann-Pick Type C.

Visit the Newsline to view the e-Newsletter: http://www.nnpdf.org/NewsLinePage.html#MayNews