Friday, June 27, 2014

NIH Cyclodextrin and HDAC Inhibitor Updates

Dear NNPDF Families and Friends,

The NNPDF central offices received an update from Dr. Forbes D. Porter to share with the community in regards to recent developments in both the Cyclodextrin and new Histone Deacetylase Inhibitors (HDACi) clinical trials.

Visit the Cyclodextrin Page:

Visit the HDACi Page:

ALERT! Family Action Required ~ 2014 NNPDF San Francisco, CA Family Conference ~ Helping Hand Stipend and Conference Registration Deadlines are fast approaching!

The NNPDF Central Office wishes to remind our Niemann-Pick Disease community members that the ~ Conference Financial Assistance Applications known as the: “Helping Hand Stipends” for the 22nd Annual NNPDF Family Support and Medical Conference are due by the end of the day Monday, June 30th, 2014.  New for 2014:  On-line Conference Registration, HH $ Stipend Registration and Hotel Room Reservations.  Find links for all of these applications and more information about the San Francisco Family Conference here:

There are still rooms available in the NNPDF room block at the Embassy Suites San Francisco, CA Airport ~ Waterfront  which will be held until Wednesday, July 9th, or until sold out, whichever comes first.

We recommend you make your room reservations as soon as possible!  If you have any questions pertaining to the conference ~ please feel free to contact the NNPDF Central Offices at: or call:  1-920-563-0930.

All are so looking forward to another stellar conference on behalf of our family membership and our loved ones.

Enjoy the weekend,

Tuesday, June 17, 2014

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

Monday, June 16, 2014

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:

Friday, June 13, 2014

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!

Wednesday, June 11, 2014

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:

Friday, June 6, 2014

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:


Tuesday, June 3, 2014

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:

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

The NNPDF Central Office Staff