Wednesday, March 19, 2014

NNPDF Research Highlights & Updates ~ March 2014 e-Newsletter

Dear Families and Friends,
In the latest e-Newsletter from the NNPDF we highlight:
  • New 2014 SAB Chair Announced
  • NNPDF Request for Application
  • Updates to Research
  • NEW Caring for Rare Disease Caregivers Website
  • 2014 Annual NNPDF Family Support and Medical Conference

Visit the link below to read the full e-Newsletter!

Monday, March 17, 2014

Caregiver Action Network: Caring for Rare Disease Caregivers

Dear Families and Friends,

The Caregiver Action Network (CAN) announced the launch of, a comprehensive online guide that addresses the distinct needs of family caregivers of loved ones with rare diseases. 

The website is a guide for family caregivers of loved ones with rare diseases and features information helpful to the caregiver such as:

Caregiving Information You Can Use Now 
Take Care of Yourself 
Complex Emotions 
Family Matters 
Other Places to Turn for Help 

Visit our Caregiver page for the full press release and more information on caring for a caregiver:

Smith Family BReaK Thru Fund - Thank you!

Thank You! Thank You! Thank You!
The 2014 Coaches' Challenge has come to an end and even though we did not take home the top prize, we did accomplish the two goals that our fund has had from the day it was established:
1. Raise awareness about Niemann-Pick Type C Disease
2. Raise money to fund NPC Research
We can't thank everyone enough for continuing to help in our fight against NPC. It is humbling to see the support from friends, old and new, as we battle NPC. We truly are aware that we never fight this battle alone
And while we can all be proud of the effort in the Coaches' Challenge and the $15K raised for NPC Research, we cannot lose sight of the fact that we still are in need of the cure. In fact, during the 10 weeks of this challenge at least 3 families (including our own) said goodbye to loved ones that lost their battle with NPC and other families joined the fight as they received news of an NPC diagnosis.
So let's celebrate the 2nd place finish in the Coaches' Challenge and resolve to come back next year with even more fight and determination.
Again...Thank you all so much for your continued support and we hope to see you at our annual golf fundraiser on August 2 at the West Lafayette Golf and Country Club.
God bless you all,
Trent, Julie, Chandlar, Braden, Riley, and Keaton Smith

Monday, March 10, 2014

Patricia "Patty" Anne O'Neil (NPC) 02/27/1956 ~ 02/22/2014


Patricia "Patty" Anne O'Neil (NPC)
02/27/1956 ~ 02/22/2014

Patty O'Neil, (Adult On-set NPC)
Dear Families and Friends,

The NNPDF central office received the sad news that Patricia "Patty" O'Neil lost her battle with adult onset NPC on February 22nd, 2014.

Many will recall she and her family members frequently attending the NNPDF Family Conference, most notably at the Manhattan Beach, California conference in 2005, but may have not known that behind her sweet smile was a devout lover of film and stage productions.  Patricia has an extensive background, not only as a professional theater & film actress, but also as a beloved drama teacher.

Patricia was a good woman who shared her life with many in her years as an actress & teacher, as well as those who loved and knew her personally. Her story is one of Perseverance and the pursuit of love fulfilled. 
For a full biography of her amazing history, you can read Patricia's obituary, linked on the Newsline:
Patty will be remembered for her youthful exuberance, caring nature, love of life and family, and generosity of heart.

Thursday, March 6, 2014

Vote for Coach Matt Painter to win $100,000 for NPC Research!

Embedded image permalink

Dear NPD Community,
To help raise awareness and make it easier to vote, we've created this card.  It can be shared online, or printed for handing out at sporting events or fundraisers.  

We've created a custom QR code, which when scanned by a smartphone will take you directly to the voting web page!  All you need is a free QR scanner, typically found in your phone's app store (Google Play, iStore etc.).  It's instantaneous access to the voting page!

We're also sharing this on our Twitter account, so share this link across your Facebook & retweet it on your Twitter to help get Coach Painter to the # 1 spot!

If you'd like the original quality image for printing, e-mail and we will send it along.

Alone we are rare, together we are strong!

Wednesday, March 5, 2014

In Memory of Brisan Stults (NPC) - 08/27/2004 ~ 03/04/2014

Brisan Stults
08/27/2004 ~ 03/04/2014

Michael, Brisan (NPC), & Jennifer Stults
Dear NNPDF Families and Friends,

The NNPDF Central office has received word that Brisan Stults (NPC ~ age 9), son of Jennifer & Michael Stults, lost his battle with Niemann-Pick Type C on Tuesday morning due to complications related to the disease.

Our hearts are broken as inform the NNPDF community of young Brisan's passing ~ he was loved by so many and taken too soon from us all.  As the "Big Brother" of the family, Brisan will be especially missed by his two younger brothers ~ Parker (NPC ~ age 8) and Duncan (age 6). Brisan's loving family, worked diligently not only on behalf of their boys with NPC but within the NPD community to help support other families also facing the daily challenges of Niemann-Pick Disease.

Our thoughts are with the Stults family & all those who loved Brisan.  The road ahead will not be an easy one, but one comfort you can be certain about is that the families of the NNPDF will be here to assist you through this time.  We will sit with you in your moments of needed silence, as well as, offer to listen and hold you near when the heartbreak simply seems too great to overcome.  Please know that all the families and friends of the National Niemann-Pick Disease Foundation are with you in our hearts and in grief.

Please visit the Newsline for the family memorial service information:

In heartbreak and sorrow,

Tuesday, March 4, 2014

Countdown to $100,000 for NPC Research - Coaches Infiniti Challenge

NPD Community Worldwide Unite!

We have an unparalleled opportunity to raise $100,000 towards NPC research, but it will only happen if YOU take action and encourage others to do the same. It's easy! Vote once a day online between now and March 16th to push the Trent and Julie Smith Family Foundation "BReaK Thru Fund" for NPC research to the finish line and the top prize of $100,000.

Click Here to Vote!

Matt Painter, Purdue University Coach and the Smith Family BReaK Thru Fund are in the Final 4 of the Coaches Challenge. With your help, NPC research could get $100,000, but only if you vote daily! Coach Painter is currently in 3rd place, but we CAN do this if everyone gets behind this project. Only 1st place wins the 100,000 dollars.

We've started this event as a daily reminder for you to vote leading up to the final day on March 16th, 2014. Share this with your families, share this with your friends and encourage them to do the same. Alone we are rare, but together we are strong!