Wednesday, April 23, 2014

Countdown to Donating for NPC ~ Million Dollar Bike Ride on May 3rd


Dear Families and Friends,

We're 10 days away from the Million Dollar Bike Ride where three families (Mayo, Reedy & Coppola) will ride to raise funds for NPC Research!  The University of Pennsylvania will only match $1 for $1 what is raised if the team acquires the minimum $17,500, which we are just shy of that mark by $3,275.

Let's support these families and take this amazing opportunity to not only honor all our loved ones diagnosed with Niemann-Pick Disease Type C but to make a difference in research.  A Dollar for Dollar match is within our reach!  Keep the momentum going!

Also of Note: The NNPDF is currently funding Dr. Charles Vite, who has the NPC Cat Colony at the University of Pennsylvania School of Veterinary Medicine:

Tuesday, April 22, 2014

April 2014 NNPDF e-Newsletter

Dear NNPDF Families and Friends,

In the April 2014 NNPDF e-Newsletter you'll find:

* 2014 NNPDF Family Conference Updates!
* Research & Clinical Trial Updates
* Requests for Applications ~ Reminder
* Welcome Dr. Liebermann! New NNPDF Scientific Advisory Board Chair!

Friday, April 11, 2014

2014 Family Conference Registration & Stipend Form Available!


Dear Families and Friends,

For all the early birds who want to start registering for the 2014 Family Support and Medical Conference, we've made the registration and helping hand stipend forms available on the NNPDF Family Conference page!  Deadline is June 30th, 2014 for both!

Click the link below and keep tuned for more information as it becomes available.

Friday, April 4, 2014

22nd Annual NNPDF Family Support and Medical Conference Thursday, July 31st ~ Sunday, August 3rd, 2014


Dear NNPDF Families and Friends,

We're pleased to announce that the 22nd Annual NNPDF Family Support and Medical Conference, being held in San Francisco, CA, has the official dates of Thursday, July 31st through Sunday, August 3rd, 2014!

Visit the updated Family Conference page, linked below, on the NNPDF web site for all the details.

Reservation & registration information coming soon!  More information will be released as it is available, so keep an eye on the web site for more updates to come!

Thursday, April 3, 2014

The Million Dollar Bike Ride ~ Raising Money for NPC Research

Dear Families and Friends,

Three NPC families, near the University of Pennsylvania, have joined forces to work collaboratively towards reaching the combined $17,500 goal to ensure the “$1 for $1” match for NPC Research in the Million Dollar Bike Ride.  Each family has created “Bike Teams” in honor/in memory of their loved one(S) diagnosed with Niemann-Pick Disease Type C:
  • Mayo Family: In memory of Chad Mayo (NPC Feb 2, 1974 ~ Oct 25, 2013)
  • Reedy/DiGiovanni Family: In honor of Chase DiGiovanni (NPC ~ 4 years)
  • Coppola Family: In honor of the Coppola brothers, Andrew (NPC ~ age 20 years) & David (NPC ~ age 18 years).
Visit the Upcoming Events page of the NNPDF website for links to donate to these great teams to help meet the combined $17,500 goal.  The Dollar for Dollar match is within our reach!