Season's Greetings from the NNPDF!

The National Niemann-Pick Disease Foundation would like to wish you all season's greetings! 

Whatever is beautiful, Whatever is meaningful, Whatever brings you happiness...May it be yours this Holiday Season.

Best wishes to all of our Niemann-Pick Disease Foundation members and their supporters. 

May the warmth of hearth and home fill your hearts with joy this holiday season! 

~ The NNPDF Office Staff and Members of the Board of Directors

NPC Vtesse Clinical Trial & Central Office Updates

Dateline: Dec 21st, 2015

Dear NNPDF Family & Friends,

The National Niemann-Pick Disease Foundation (NNPDF) is pleased to be able to share with our NPD community families updates associated with the following:

- Vtesse VTS-270 NPD Type C Clinical Trial UPDATES

- NNPDF Equipment Exchange Program and NEW posted items

Click here to view the NNPDF e-Blast: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1348668

Dec 18th, 2015 ~ From the Desk of Chris Klauer, NNPDF Family Services & Marketing Coordinator

Dear NNPDF Families and Friends,

The Holidays are coming! The Holidays are coming! No don’t run for the hills! Instead check out the Holiday Survival Guide that I found!

My update this week highlights:

- Holiday Survival Guide

- NNPDF & CCNNPDF Membership Update

Please feel free to contact me at: nnpdf@nnpdf.org or give me a call at: 1-877-287-3672 if you have any questions pertaining to the work of the foundation. If you find a great resource, please pass it along so I can share it with the rest of our NNPDF Family Membership!

Have a great weekend!

Click here to view this week's Family Services Update post: http://www.nnpdf.org/FamilyServiceSupport.html#Dec182015

Chris Klauer

NNPDF Family Support and Marketing Coordinator

Ghazi Tamim (NPA) 10/21/2013 - 12/07/2015

Dear NNPDF Families and Friends,

The NNPDF Central Office today received notice of the passing of Ghazi Taimur (10/21/2013 – 12/7/2015 ~ NPA).

Ghazi’s father Taimur writes: “We are saddened to inform all that our beloved son Ghazi, after 2 ½ years of fighting NPA died on 7th of December 2015. Please remember him in your prayers.”

To Ghazi’s loving parents, Taimur and Fatima please know that your NNPDF family is here for you and to let us know if you need anything in the coming days, weeks and months ahead. We are holding you all in our hearts and thoughts.

Year-end Shopping for the Gift of Hope!

Dear NNPDF Families and Friends,

As year-end approaches and shopping for loved ones begins to hit “fever-pitch” level….more and more of us are turning to on-line shopping services for assistance in finalizing our Santa wish list! If you have found yourself letting your “fingers do the shopping on-line” ~ we have an easy way in which your shopping efforts can benefit the NNPDF and our programs at the same time.

The NNPDF has taken steps this holiday season and throughout the entire year, to provide the opportunity for our supporters who enjoy on-lining shopping the ability to “Gift of Hope for a Brighter Future” for all those diagnosed with Niemann-Pick Disease (NPD). 

Click here to view the NNPDF e-Newsletter highlighting ways you can shop to support the Foundation: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1346905

ALERT: New Recruiting Sites for VTS-270 (2-hydroxypropyl-β-cyclodextrin) for NPC

ALERT: United States NPD Type C Families & Friends

The NNPDF central office noted today that additional investigational sites for Vtesse’s VTS-270 (2-hydroxypropyl-β-cyclodextrin) Phase 2b/3 clinical trial for NPC has been updated and is now actively recruiting patients at the approved clinical trial centers in Orange, CA & Allentown, PA.

Families should follow enrollment criteria as provided on the www.clinicaltrials.gov page. To view these criteria, location details and for additional contact information please visit www.clinicaltrials.gov and refer to study reference number: NCT02534844

For all previous updates regarding this clinical trial, visit the the links below:

Vtesse Phase 2b/3 Clinical Trial Historical Timeline can be viewed: http://www.nnpdf.org/Vtesse.html

NIH Phase 1 Clinical Trial Historical Timeline can be viewed: http://www.nnpdf.org/Cyclodextrin.html

 

Kaitlyn Bexton (NPC) ~ 01/24/2001 ~ 12/8/2015

Dear NNPDF Families and Friends,

It is with a heavy heart that we notify our NPD family membership of the passing of Kaitlyn Bexton (January 24, 2001 – December 8, 2015 ~ NPC), who courageously fought the NPC battle for 14 years. Kaitlyn loved watching “Dancing with the Stars”, listening to music and spending time with her family. Katie had an infectious smile and filled a room with her spirited, happy and playful energy. 

Kaitlyn’s family takes comfort in the fact that she is now playing with her sister Ally (Alexandra), who also suffered from Niemann-Pick Disease Type C and passed away in 2009 at the age of 10. 

To Kaitlyn’s loving parents, Stasha and Michael, and beloved younger sister, Samantha, please know that your NNPDF family is here for you and to let us know if you need anything in the coming days, weeks and months ahead. We are holding you all in our hearts and thoughts.

A link to Kaitlyn’s obituary will be posted as soon as it is available on the NNPDF website: http://www.nnpdf.org/Newsline2015.html#Bexton