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.
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Please visit this link to order items for 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
2011 October Awareness Month events and activities
Recent fundraising and awareness events hosted by families and friends
Predator Contest to Benefit NNPDF
Chilhowie, Virginia
February 24 - 25, 2012
Lewis & Clark Outdoors of Chilhowie, Virginia, will sponsor a Predator Contest with proceeds to benefit the NNPDF. The contest will be held on Friday and Saturday, February 24 and 25, and is in honor of sisters Alisha and Amber Casey (NPC), daughters of Diana and James Casey of Saltville, VA.
The Predator Contest will assign points for bobcats, coyotes and foxes. The entry fee is $25.00 per hunter, and first prize will be a $25.00 gift certificate to Cracker Barrel Old Country Store and Restaurant.
Questions should be directed to Matthew Lewis at Lewis & Clark Outdoors, 1227 E. Lee Hwy., Chilhowie.
Press release with more details.
[Feb 15, 2012; mem]
Pick Zoe
Concert to Benefit NNPDF in Memory of Zoe Bachman
Saturday, March 3, 2012
6:30 - 9:00 p.m.
Kings Mountain (North Carolina) High School Auditorium
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| Zoe Bachman 12/19/03 - 6/9/06 |
Pick Zoe, a special concert event, will raise awareness and funds for Niemann-Pick Disease in memory of little Zoe Bachman. Zoe, the daughter of April and Russell Van Dyke and Ken and Misty Bachman, passed away at the age of 2-and-a-half years from the effects of Niemann-Pick Disease Type A/B.
Pick Zoe will be held at the B.N. Barnes Auditorium, Kings Mountain High School, 500 Phifer Road, Kings Mountain, NC, on Saturday, March 3, beginning at 6:30 p.m. Tickets are $5 in advance, $7 at the door, and are available by calling 828-320-2857 or email pickzoe@hotmail.com.
The concert will feature StorySide: B and other local artists, with special guest speaker Jody Griffin.
Proceeds will benefit the National Niemann-Pick Disease Foundation's Quest for a Cure.
Printable flyer/poster for Pick Zoe (pdf) www.caringbridge.org/visit/zoebachman
[Feb 8, 2012 mem]
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Fishing for Charities
Tournament to Benefit NNPDF |
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The boat of Fishing for Charities' founder and president |
Fishing for Charities Team with Raiden Linkous (NPC) center front, and dad, Dwayne, directly behind him. |
Fishing For Charities is a bass fishing tournament trail that is devoted to raising money for selected charities. The NNPDF will be the beneficiary of funds raised by the tournament on Saturday, March 24, 2012, at Shearon Harris, North Carolina. The tournament is dedicated in honor of 15-year-old Raiden Linkous (NPC).
For more details, please visit www.fishingforcharities.com. Flyer/poster for the March 24 event.
The Online Outdoorsmen magazine, Online Fishermen (scroll to pages 46-47) , ran this story (PDF) about Fishing for Charities and Dwayne Linkous' work to raise funds through this Tournament Trail.
Check out this YouTube video, produced by his Middle School, in celebration of Raiden's 8th grade graduation.
[Dec 28, 2011 mem]
Yankee Candle Sale to Benefit NNPDF
In Memory of Bryanna DeSouza
Naugatuck, Connecticut
March 19 - March 30, 2012
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| Bryanna DeSouza (NPC) (1992 - 2006) on her first day of kindergarten |
Judy DeSouza will hold a Yankee Candle sale, with proceeds to benefit the NNPDF in memory of her daughter, Bryanna DeSouza. The sale will go from March 19 through March 30, with orders local to Naugatuck, Connecticut, only. Please email Judy for more information or to place an order.
[Dec 5, 2011 mem]
Kure 4 Kamryn
Charity Ride and Event
Saturday, March 24, 2012
Guntersville and Rainbow City, Alabama
A special Kure 4 Kamryn Charity Ride and Event is being planned for Saturday, March 24. The Charity Ride will begin at 10:00 a.m. at the 12th Street Baptist Church in Rainbow City. A donation of $20 is requested but not required. Other activities (details to be announced) will be held at Civitan Park, Guntersville.
These awareness and fundraising events are being planned in honor of Kamryn Brumbeloe (NPC). For more information, visit the Brumbeloe family's blog: http://www.brumbeloes.blogspot.com/
[Feb 20, 2012 mem]
Johnathan's Dreams - Cure NPC
Wine Tasting and Silent Auction Event
July 2012 - date TBA
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The second annual Johnathan's Dreams - Cure NPC wine tasting and silent auction event is being planned for July 2012. The gala will raise awareness of Niemann-Pick Disease and funds for the NNPDF in honor of Johnathan Spencer-Merrill (NPC). Five-year-old Johnathan is the son of Rebecca and Keith Spencer of Gilroy, California. Photos above are from the 2011 event. More details on the 2012 event will be posted as they become available. http://www.johnathanspencer.org/index.html [Jan 16, 2012 mem] |
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Erin's Road Race
Hanover, Massachusetts
Summer 2012
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| Erin Roberts (NPC) 4/5/1980 - 12/1/04 |
The family of Erin Arline Roberts is planning the Erin Roberts Memorial Road Race and Fun Run for this summer -- date to be announced. The event will be held in Hanover, MA, to benefit the NNPDF's NPC research program.
Watch this space for more details as they become available.
[Feb 2, 2012 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]
Kids Behavior Control Exercise (KBCE)
Product
Sales to Benefit NNPDF
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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]