NNPDF Promotional Products Available
Great fundraising items
or thank you gifts for volunteers!
Upcoming Fundraising and Awareness Events
Zumba Dance Party ~ in Memory of Naomi Tyrrell (NPC)
Monday, June 2nd, 2014 | 7:00pm - 8:00pm
Perry Hill School
It's back! The Zumba event that began last year when Mackenzie Gillen reached out to her school and asked if she could hold a fundraiser to honor the memory of her dear friend, Naomi Tyrrell who lost her battle with NPC in 2012.
The Zumba dance party is being held on Monday, June 2nd at the Perry Hill School Cafetorium from 7:00pm-8:00pm and is being taught by a certified Zumba instructor, Lindsay Morrell. Proceeds will come to the NNPDF to benefit NPC research.
Click Here for the event flyer and registration
[May 29th, 2014 ~ blg]
Raiden's Ride Fundraiser
June 21st, 2014 9:00am
Abundent Life Ministries
Raiden Dwayne Linkous
(NPC ~ 04/24/1996 - 11/04/2012)
In memory of their son, Raiden, the Linkous family is holding a fundraiser to raise awareness and funds for Niemann-Pick Disease Type C.
The fundraiser is a ride through the country that will have raffle tickets, door prizes and 50/50 tickets. Donations are welcome for lunch following the ride at Abundant Life Ministries.
Come show your support in honoring Raiden's memory while raising funds and awareness for NPC research!
[May 2nd, 2014 ~ blg]
Johnathan's Dreams Fundraiser
June 28th, 2014; 2:00pm - 7:00pm
Come join the Spencer-White family for the 5th annual Jonathan's Dreams Fundraiser, hosted at the Fortino Winery! Mark your calendars for some good food, wine tasting, silent auction & raffle to raise awareness and funds for NPC research! Proceeds from the fundraiser will go towards NPC research in honor of Jonathan Spencer!
For more information, see the Event Flyer!
[May 2nd, 2014 ~ blg]
Yankee Candle Fundraiser ~ In Memory of Bryanna Desouza
February 1st - June 31st, 2014
~ONLINE & Local Fundraiser~
Bryanna Desouza (NPC)
Jan 20, 1992 ~ Dec 5, 2006
Judy Desouza is once again holding a Yankee Candle fundraiser in Memory of her daughter, Bryanna (NPC), but this year it is local AND online! Now you can be anywhere in the US and still participate by ordering the world's best loved candle!
Many of us already buy these long lasting candles, so why not purchase them to benefit the NNPDF? With over 50 scents and new ones being created each year you are sure to find one that is perfect for you! Give them as a gift, or purchase one for yourself to indulge in these wonderful scents.
Judy, in working with Yankee Candles, has dedicated 40% of profits for both local and online orders to come to the NNPDF, with shipping being either:
- $5.00 shipping flat fee for orders under $100.00
- Free shipping on orders over $100.00
Online orders can ship direct to anywhere in the USA!
The online store is officially Online!
- Visit www.yankeecandlefundraising.com
- Enter Group # 99832018
- Click "Start Shopping" to begin!
Judy's in person, local ordering will start on March 14th-March 28th, 2014 if you don't want to purchase online and are local to Naugatuck, Connecticut.
[Dec, 2nd 2013 ~ blg, UPDATED: 01/17/2014 ~blg ]
7th Annual Riley's Run ~ Memorial Rude and Poker Run
July 12th, 10:00 am
|Riley Corbitt (NPC)
7/27/02 - 10/29/08
The 7th Annual Riley's Run will be held on Saturday, July 12th, to raise awareness into Niemann-Pick Disease and funding for research. Riley's Run is held by the American Cruisers Chapter 45 in memory of little Riley Corbitt, who passed away from the effects of Niemann-Pick Disease Type C in 2008, at the age of five.
In addition to the poker run, the event features an auction, door prizes and a live band and pizza at the end of the ride.. All proceeds benefit the NNPDF in Riley's memory.
[Jun 25th, 2014 ~ blg]
22nd Annual NNPDF Support and Medical Conference
~ San Francisco, CA
Thursday, July 31st ~ Sunday, August 3rd, 2014
Dear Friends and Families,
Welcome to 2014! A new year means a new Family Conference, and we're excited to announce that this year's conference will be held in San Francisco, CA in summer 2014! Tara Patterson-Martin and Rebecca Spencer-White have kindly agreed to host this year.
As we get closer, more information will be released. Keep your eyes on the NNPDF Family Conference page, as well as the Newsline for the latest updates.
[Jan, 22, 2014 ~ blg UPDATED: April 4th, 2014]
8th Annual Dillon Papier Charity Golf Tournament, Dinner and Silent Auction
Hollow Creek Golf Club, Middletown, MD
Friday, September 26th, 2014
This year's annual Dillon Papier Charity Golf Tournament is scheduled for Friday, September 26th, 2014. Registration will begin at 9:00 a.m., with a shotgun start at 10:30.
This is a 4-person scramble format tournament, with prizes for closest to the pin, longest drive, etc., plus raffles, gift bags, and other prize opportunities.
The event will be held at Hollow Creek Golf Club, 50 Glenbrook Drive, Middletown, MD, 21769; Tele: 301-371-0400. Visit www.hollowcreekgolfclub.com.
Lunch will be provided, along with water, soda and beer all day. Dinner and a silent auction will begin immediately after.
Sponsorships are available at several levels. Please contact Mike Hayden for details.
This event benefits the National Niemann-Pick Disease Foundation, and our Quest for a Cure!
Thank you for your continued support!
[May 9th, 2014 ~ blg]
~On hiatus till further notice~
We are excited to announce that
has proudly joined the ranks of Dillon’s Army!
Beginning on Monday, June 2nd, and continuing on THE FIRST MONDAY OF EACH MONTH until the end of the year, Foster’s Grille, located at 8925 Fingerboard Road in Turning Point Center, will donate 25% of all sales proceeds to the National Niemann-Pick Disease Foundation. Furthermore, Foster’s will match any amount raised through your patronage.
The NNPDF, a national 501(c)(3) non-profit, works to support and promote research to find treatments and a cure for Niemann-Pick Disease (NPD). As a rare orphan disease with fewer than 500 diagnosed cases in the US, funding on a national level is slim, and families are left with few options for their children. The families of the NNPDF in a true “grass-roots effort” have taken on the challenge head-on and work diligently to raise funds to assist with the support of this vital and potentially life-saving research.
Please plan on joining your friends and neighbors on Mondays at Foster’s Grille.
Never doubt how your small gesture can make a big difference to the Papier family and others with children living with this horrible disease. Every dollar raised brings new hope!
[May 27, 2008]
Lisa Chavez of New Mexico and mom to Breann
who passed away in 2006
at age 3 from NPC, has hand-crafted candles for sale.
Proceeds from this candle go to the National Niemann-Pick Disease Foundation.
This foundation's goals are to promote
research into a cure for NPD, along with connecting families who are struggling
with this rare disease, helping alleviate feelings of isolation and despair.
item # cost size
FR-NF $20.00 16oz. - soy
scent - creamsicle
Picture of Breann relying on the help of her mom and dad to take a few steps.
Proceeds from this candle go to Ducks
for Bucks, a fundraiser that was created in memory of Breann Chavez and
her love for her ducks. Ducks for Bucks raises money for
Niemann-Pick families. Money is given directly to the families so
that they may use it in the way that will best help them at the time. It
is the goal of Ducks for Bucks to help give a little extra money to these
families who have no extra time. For more information on Ducks for
Bucks call 505-632-7649
Item # cost size
FR-DD $20.00 16oz. - soy
scent - creamsicle
Picture is of Breann sitting by the pond with her ducks.
[April 29, 2008]
Kids Behavior Control Exercise (KBCE)
Sales to Benefit NNPDF
The Kids Behavior Control Exercise system was designed by Vander Braflat to provide parents with a means of constructive discipline and behavior modification. Proceeds from the sale of the KBCE will benefit the NNPDF in memory of Vander's daughter, Bryanna DeSouza, who passed away in 2006, at the age of 14, from the effects of Niemann-Pick Disease Type C.
To learn more about the KBCE or to place an order, please visit www.sweetdiscipline.com .
[Mar 17, 2011 mem]