Current
Fundraisers
NNPDF Promotional Products Available
Great fundraising items
or thank you gifts for volunteers!
The NPD Persevere pin (shown enlarged, below) makes a nice gift for family
and friends who support our quest for a cure.
Please visit this link to order items that will meet your fundraising needs!
Customizable
press release Check out this sample press release which
can be customized to help publicize your upcoming event. We
can help you tailor the press release if you need assistance. If
you need assistance writing a press release for a fundraising or awareness
event, please complete this
press release information form and return it to the NNPDF Central
Office.
Upcoming Fundraising and Awareness Events
(Click here to see other recent fundraising and awareness events hosted by families and friends)
Yankee Candle Sale to Benefit NNPDF
March 4 - 18, 2010
Naugatuck, Connecticut
 |
| Bryanna Scribner Desouza (NPC) 1/20/92 - 12/5/06 |
Judy Desouza will hold a Yankee Candle Company fundraiser in memory of her daughter, Bryanna Scribner Desouza (NPC), from March 4th through the 18th. Candles will be delivered to Judy for local pickup or delivery in Naugatuck, Connecticut. Please email Judy for more information.
[Feb 10, 2010 mem]
Third Annual Ryan's Ride Poker Run
American Legion Riders Chapter 75
Saturday, March 27, 2010
 |
| Ryan Richardson (NPC) 5/27/00 - 10/18/05 |
The American Legion Riders Chapter 75 of Crestview, Florida, will once again ride and raise money to fight Niemann-Pick Disease in memory of Ryan Richardson (NPC). The ride will be held on Saturday, March 27.
[Feb 3, 2010 mem]
Fishing for Charities to Raise Funds for NNPDF
March 27 - Cherokee Lake, Tennessee
May 29 - Claytor Lake, Virginia
 |
 Our 2010 tournament schedule will run throughout Virginia, North Carolina and Tennessee, with proceeds donated to selected charities. We would love for you to be a part of an event that everyone can benefit from. |
| Fishin' for the Mission Team with Raiden Linkous (NPC) front and center, and dad Dwayne directly behind him. |
Fishing For Charities is a bass fishing tournament trail that is devoted to raising money for various charities. The NNPDF will be the recipient of funds raised at two events to be held March 27 at Cherokee Lake, Tennessee, and May 29 at Claytor Lake, Virginia.
For full details including registration information, rules, etc., please visit www.fishingforcharities.com
[Feb 5, 2010 mem]
Raising Funds and Awareness
School Shows Support for Cardinal Family and Others Affected by NPD
 |
| Damon Eli Cardinal (NPA) 12/26/06 - 4/16/08 |
As the two-year anniversary of the passing of little Damon Cardinal (NPA) approaches April 16, St. Teresa's School, where Damon's three eldest siblings attend, is planning a balloon release to honor Damon's memory. Nine-year-old Dylan Cardinal's teacher, Mrs. Theresa Lashmar, is also planning an awareness and fundraising event in memory of Damon. Mrs. Lashmar's students will have the opportunity to purchase raffle tickets for movie passes and popcorn donated by Cineplex Odeon Theatre, with proceeds to benefit the CCNNPDF. The class will also watch a video and make scrapbook pages in memory of Damon for Dylan to take home as a keepsake.
[Feb 15, 2010 mem]
Running 4 Kelly
Marathon and Half-Marathon Team to Raise Funds for NNPDF
April 24, 2010
 |
 |
| Kelly Thompson and her brother, Jim, one of the marathoners | The finish line at the 2009 Country Music Marathon |
Rebecca McGuire, cousin of Kelly Thompson (NPC), is organizing a team and training in preparation for the Country Music Marathon in Nashville, Tennessee, on April 24. The team will run to raise money for research and family support services in honor of Kelly Thompson, who is affected by Niemann-Pick Disease Type C.
Running 4 Kelly Team members include: Rebecca and her husband, Brad McGuire; Kelly's brother, Jim Thompson; another cousin, Kate Carpenter; and good friends Kerry Benoit and Corey Kozuch.
Check out the team blog here, and follow their progress up to the event. Donations toward the team goal of $3,000 may be made online through Network for Good or by mailing your check to NNPDF -- please be sure to note in the dedication box or memo line that your donation is in honor of Running 4 Kelly.
[Feb 11, 2010 mem]
Race for Adam
Fifth Annual 5K Run/Walk
May 1, 2010
Allentown, Pennsylvania
 |
| Adam Recke (NPC) and Family |
The Fifth Annual Race for Adam 5K Run/Walk will be held Saturday, May 1st, at Lehigh Parkway, Allentown, Pennsylvania. Highlights of the event include live music, raffles, children's entertainment, food and beverages, and much more. The race route is fast with short hills, over a very scenic course. There are categories for men and women from 14 years and up.
Proceeds will benefit the Race for Adam Foundation, SOAR (Support of Accelerated Research) and the NNPDF. Visit www.raceforadam.org for more details including a registration form.
[Feb 18, 2010 mem]
The 8th Annual Alex and Laura Vaughan Memorial Golf Tournament
Saturday, June 19, 2010
 |
Watch this space for more details as they become available.
[Dec 17, 2009 mem]
Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction
Saturday, June 26, 2010
Spring Creek Golf Center
Cold Spring, Wisconsin
 |
| Stacey Vorpahl (NPC) 1/3/85 - 10/9/04 |
Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, June 26, in memory of their daughter, Stacey (NPC), who passed away in 2004. This event will benefit the National Niemann-Pick Disease Foundation to support research into treatments and a cure for Niemann-Pick Disease.
[March 9, 2010 mem]
Quassy Amusement Park Fundraiser
Sunday, August 22, 2010
Middlebury, Connecticut
 |
| Bryanna Desouza (NPC) 1/20/92 - 12/5/06 with mom, Judy Desouza |
Join Judy Desouza and family and friends at Quassy Amusement Park on Sunday, August 22, to raise funds for NPC in memory of Judy’s daughter, Bryanna Desouza.
The event will include All Day Rides, Quassy Beach and Saturation Station, and a catered dinner in the park’s private patio area overlooking Lake Quassapuag. Raffle baskets will also be available during the dinner, with proceeds benefiting the fundraiser.
Price: $21/ticket. NNPDF donation included in each ticket price. Free parking.
Get your tickets early, before July 1, 2010! Click here to email Judy for tickets.
[Feb 19, 2010 mem]
Child Star Kaitlyn Maher Sings for Kids with NPD
In this YouTube video, Kaitlyn Maher performs her inspirational song, "You Were Meant To Be," for children with Niemann-Pick Disease. The video features photos of children with Niemann-Pick Disease Type C.
Maher was an America's Got Talent Top 10 performer in 2008, at the age of 4 years old! Kaitlyn is now a "grown up" six-year-old, with a new album released in December 2009..
Kaitlyn also served as the voice of the puppy "Tiny" in the movie Santa Buddies, and recently finished filming for a new movie The Search for Santa Paws, to be released later this year.
[Jan 18, 2010 mem]
"Inspirational Quilt" Showcases NPD Family Videos
The movie Extraordinary Measures, set to premier January 22, is hosting a video contest with a theme of "Make Your Own Miracle." Several of our NNPDF families have entered videos in the contest, focusing on the families' personal messages in support of NPC research. The videos are arranged into an inspirational "quilt," which can be viewed here.
Videos relating to Niemann-Pick Disease which have been posted to the "quilt" so far include:
"And This My Child" -- in honor of Naomi Tyrrell, age 6 (NPC), and in memory of Breann Chavez (NPC) Gavin Lopez -- in honor of Gavin Lopez, age 5 (NPC)
Save Gavin -- in honor of Gavin Lopez, age 5 (NPC)
Hadley's Hope -- in honor of Peyton Hadley, age 12 (NPC), and Kayla Hadley, age 9 (NPC)
Addi & Cassi's Story -- in honor of Addi and Cassi Hempel, age 5 (NPC)
Hope on the Horizon -- in honor of Elise Barton, age 4 (NPC)
Genetics 101 (narrated by Alec Baldwin) -- in support of lysosomal storage diseases
To find a video, go to the SEARCH window below the “quilt” http://extraordinarymeasuresthemovie.com/#/quilt (in the lower right-hand corner of the Web page) and type in the name of the video. To cast your vote for a video, click the red VOTE button at the top right-hand corner of the video's window.
Every vote each video receives will increase the chance that it will win and be awarded $10,000 toward their designated cause.
Extraordinary Measures tells the story of John and Aileen Crowley's desperate search for a treatment for their two children affected by Pompe disease, a fatal lysosomal disease related to Tay-Sachs. The movie stars Brendan Fraser and Keri Russell as John and Aileen Crowley, and Harrison Ford as scientist Dr. Stonehill.
[Jan 15, 2010 mem]
Frederick, Maryland
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]
Willow Wicks Fundraiser Candles
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.
For more information on how to order a candle seen below,
visit www.willowwicks.com or
mail in the order
form with payment.
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]