Friday, May 25, 2012

Videocast of Presentation by Dr. Porter

Development of Therapeutic Interventions for
Niemann-Pick Disease, Type C1

Dr. Forbes "Denny" Porter of the National Insitute of Child Health and Human Development, National Institutes of Health, presented Clinical Center Grand Rounds at the National Institutes of Health on May 16, 2012. Dr. Porter's presentation was titled Development of Therapeutic Interventions for Niemann-Pick Disease, Type C1.

The NIH produced a videocast of Dr. Porter's presentation, and you can download or watch the video.  Visit the NNPDF's NewsLine page for more information and a link. 

Visit the NewsLine page often for the latest updates in news and research.  See also our Upcoming Events page for fun and worthwhile awareness and fundraising events being hosted all around the country, including the annual Ducks for Bucks family event coming up June 2.

Friday, May 4, 2012

Monica Taillefer

Monica Marie Amanda Taillefer (NPC)
8/5/09 - 5/2/12

With broken hearts, we share the news that Monica Taillefer, the daughter of Simon Taillefer and Heather Patenaude of Quebec, Canada has passed away. "Princess Monica," as we love to call her, was two and a half years old, far surpassing all expectations. Monica passed away at home in the loving arms of her parents, at 9:34 p.m. on Wednesday, May 2nd. Remarkably, Monica was also born on a Wednesday at 9:34 p.m.

From the beginning, persisting in the face of their baby's grim diagnosis of Niemann-Pick Disease Type C, Heather and Simon resolved to make every day and every moment special. The Patenaude-Taillefer family generously shared their family's story and photos with us to help raise funds and awareness for the fight against Niemann-Pick Disease, and through the seasons, little Monica's happy face has brought smiles to so many who never had the joy of meeting her.

Our deepest sympathy to Heather and Simon, their extended family, and many friends at this very sad time.

Visit Monica's special page to see photos of her family's celebrations.

For more information about Niemann-Pick Disease, contact the National Niemann-Pick Disease Foundation (