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)
Hunter's Hope Memorial 14th Annual Drive for the Cure
Golf Tournament and Auction
Friday, September 17, 2010
Hanging Rock Golf Club
Salem, Virginia
Hunter Ozmer (NPC) |
The 14th Annual "Hunter's Hope" Memorial Golf Tournament and Auction fundraiser to benefit the National Niemann-Pick Disease Foundation will be held on Friday, September 17. The $100.00 Hunter’s Hope tournament package includes golf cart, greens fee and awards dinner, a special Hunter’s Hope golf shirt, and competitive awards. Four-person teams may be all-men, all-women, or co-ed. Single entrants will be placed with a team. The Hunter’s Hope tournament will have a shotgun start at 1:00 p.m., with the awards dinner and auction beginning at 6:00 p.m. under tents next to the clubhouse. Click here for the tournament brochure, and here for the entry form and sponsorship form. Non-golfers are also invited to come and participate in the auction. Many very nice auction items will be available including artwork, pottery, furniture, jewelry and sports memorabilia items. Auction items may be viewed in advance at the Hunter’s Hope Memorial Web site (www.huntershopememorial.com). |
[July 26, 2010 mem]
Dillon Papier Charity Golf Tournament
Friday, October 1, 2010
Hollow Creek Golf Club
Middletown, Maryland
 |
| Dillon Papier, age 7 |
The annual Dillon Papier Charity Golf Tournament is set for Friday, October 1, 2010. Registration will begin at 9:00 a.m., with a shotgun start at 10:30. This is a 4-person scramble format tournament. Prizes for closest to the pin, longest drive, etc., plus raffles, gift bags, and other prize opportunities. 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 see the brochure or contact Mike Hayden for details, or visit www.dillonsfight.org.
This event benefits the National Niemann-Pick Disease Foundation. Details and registration forms are available here.
[May 7, 2010 mem]
Big House Big Heart Event
Taft Family and Friends to Raise Funds in Memory of Little John and Kate
October 3, 2010
Ann Arbor, Michigan
 |
The family and friends of John and Chris Taft will participate in the Big House Big Heart (BHBH) 5K/10K walk/run on Sunday, October 3rd, to raise funds in memory of the Taft's children, Little John and Kate, who both passed away from Niemann-Pick Disease Type A.
The BHBH starts and finishes at the famous University of Michigan's famous football stadium, "The Big House." It's the largest stadium of its kind in the country, seating over 107,000 spectators, according to the BHBH Web site: http://www.thebighousebigheart.com.
Run/walk participants will conclude the race by going through the tunnel onto the football field, viewing themselves on the Big House Big Screen! Walkers, strollers and wheelchairs are welcome!
Sign up by August 31st to take advantage of the discounted registration fee.
5k and 10k: $32 prior to Aug. 31; $36 from Sept. 1 - Oct. 1; $39 the weekend of the race
1 mile fun run: $13 prior to Aug. 31; $18 from Sept. 1 - Oct. 1; $23 the weekend of the race
Tacoma School of the Arts Walk-a-Thon
October 8, 2010
 |
| Ty Quandt |
Students of the Tacoma (Washington) School of the Arts will participate in a walk-a-thon to benefit the NNPDF on Friday, October 8th. The school's 456 students will walk in honor of Ty Quandt (NPC), the son of NNPDF Board Chair Karen Quandt and her husband, Gene, of Edgewood, WA.
NNPDF member Lorna Tyrrell (mom of Naomi, NPC) is designing a special shirt for the walk-a-thon, with a dragon on the front (at Ty's request) and the motto PERSEVERE on the back.
[Aug 24, 2010 mem]
Yankee Candle Fundraiser
October 21 - November 4, 2010
Naugatuck, Connecticut
 |
Bryanna DeSouza, NPC
(1/20/92 - 12/5/06), |
This fall, Judy DeSouza will again host a Yankee Candle Fundraiser to benefit the NNPDF, with orders being taken from October 21st through November 4th. Yankee Candles offer both new and traditional scents, thicker gift wrap and wonderful gift sets, priced nicely, with many items $10.00 and under!
This sale is held in memory of Judy's daughter, Bryanna DeSouza, who passed away from Niemann-Pick Disease Type C at the age of 15. Watch this space for more details as the sale dates draw nearer.
[June 11, 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]