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. | |
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. |
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Upcoming Fundraising and Awareness Events
Recent fundraising and awareness events hosted by families and friends
Letter from Greg Crawford - Dean of Notre Dame College of Science
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| Dean Greg Crawford during 2012 Road to Discovery ride |
Dear NPC families,
Below is a letter from Greg Crawford, the Dean of the College of Science at Notre Dame, asking for your help. Greg is preparing for his annual cross-country bike ride. Funds raised from this event will go to the University of Notre Dame Michael, Marcia and Christa Parsegian fund for NPC research.
Dear NP-C family,
For the past three summers, I have dedicated one month to raising awareness and funds for NPC research through cross-country bike rides – Tucson, Ariz., to Notre Dame, Ind., in 2010; Boston, Mass., to Dallas, Tex., in 2011; Boston to Pebble Beach, Calif., in 2012. The rides have generated nearly 100 articles and media clips that highlight Notre Dame’s research in the fight against NPC and our strong partnership with the Ara Parseghian Medical Research Foundation. This summer, I will embark on another ride for the cause. I will be riding from Los Angeles, Calif., to Baltimore, Md., arriving in time for the National Niemann-Pick Disease Foundation 21st Annual Family Support and Medical Conference. This year’s 3,476 miles will bring my four-summer total to more than 11,000 miles. I will start from Los Angeles around July 1.
Each year, I write a daily blog about the ride. This year, I intend to dedicate a portion of my website to a “Parents’ Corner,” and I am requesting the honor of a contribution from you. Please send me a write-up on your child of up to 300 words – what they love, any stories you’d like to share, your child’s favorite activities (games, hobbies, interests, etc.) and your hopes. I would be happy to include a photograph of your child and/or family if you would like.
Thank you for considering my request. I am so honored to be riding across America again to raise funds and awareness for NPC. I have met so many wonderful children and families over the years, and it is a real honor to ride for you and your family.
If you wish to send material for the blog, please direct it to the Notre Dame staff – Gregory_Crawford@nd.edu, nhaley@nd.edu, and Stephanie.Purcell.27@nd.edu – no later than June 15. Please include your formal permission to post your statement and photographs publicly on my Notre Dame blog.
Thank you again, and I hope to see you in Baltimore!
Yours in Notre Dame,
Gregory P. Crawford
Dean, College of Science
University of Notre Dame
Notre Dame, IndianaThanks for your support.
[May 16th, 2013 blg]
The Beach Boys to Perform for DART!
Saturday, June 1st, 2013
Palace Theatre
Stamford, CT
"Fun, Fun, Fun" is what DART always brings to its annual gala! Dana's Angels Research Trust (DART) is excited to announce its annual Gala Benefit and Concert on SATURDAY, JUNE 1, 2013, with Rock and Roll Hall of Fame icons THE BEACH BOYS, at the PALACE THEATRE in Stamford, Conn. The Gala will kick-off with a VIP cocktail reception and pasta bar by World-Famous RAO's Italian Restaurant, silent and live auctions, and hosted by Kathie Lee and Frank Gifford.
Visit the DART Gala Event Page for more information.
[Feb 21st, 2013 blg]
4th Annual Hadley Hope ~ Vegas in the Valley Fundraiser
Saturday, June 1st, 2013
Rougue Valley Country Club
Medford, OR
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| Peyton (NPC), Kayla (NPC), and Jonah Hadley |
Please plan to come out to the Rogue Valley Country Club for Vegas style gaming, including Blackjack, Texas Hold Em, Roulette, and more. Play for fun, and a chance to win fabulous prizes. A silent auction will also be available! Food, drinks, and fun all included!
The Hadley family is looking for more donations to add to their prizes and auctions. If you have items to donate, gift certificates, vacation stays, time shares, your talents, anything at all would be appreciated.
For information on contacting the family, as well as tickets and registration: Click here
[April 12th, 2013 blg]
7th Annual Ducks for Bucks
Saturday, June 1st, 2013 12:00pm-5:00pm
Wines of the San Juan Winery
Blanco, NM
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| Breann Chavez (NPC) |
Ducks for Bucks is a non-profit organization that was created in memory of Breann Chavez who passed away at the age of three from Niemann-Pick Disease, type C. All money raised goes directly into the hands of families caring for children with NPC, so they can personally apply it towards their greatest need at the time.
This is a day filled with fun activities for the kids, like horse rides, carnival games, clowns, face painting, jumpys and more. There are also raffles, silent art auction, live music, food and wine tasting, all under the shade of the winery's large cottenwood trees.
You can view the Event Flyer for more information on the event.
[April 22th, 2013 blg]
2013 5K Run/Walk for Ty Quandt
Saturday, June 1st, 9:00 AM
Bradley Lake Park
Puyallup, WA
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| Ty Quandt (NPC) |
The Puyallup High School's Health Occupation Students of America club (HOSA) is hosting a 5K run/walk in honor Ty Quandt. All of the proceeds earned will go directly to the National Niemann-Picks Disease Foundation.
To register for the event: Click Here
[April 22th, 2013 blg, updated May 9th, 2013 blg]
Zumba Fundraiser
Monday, June 10th, 2013 7:15pm
Perry Hill School
Shelton, CT
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| Naomi Tyrrell (NPC) |
Don't forget to mark your calendars for the Zumba fundraiser, hosted by the Tyrrell family, in memory of their daughter Naomi Tyrrell.
The event will be held at 7:15pm at the Perry Hill School in Shelton, CT on Monday, June 10th.
Even if you don't like Zumba, Naomi's Delight cupcakes will be available as well, so come show your support!
Click Here to see the event flyer!
[June 7th, 2013 blg]
Erin Roberts' Memorial Road Race 5K
Saturday, June 15th, 2013
St. Mary of the Sacred Heart Church
Hanover, MA
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| Erin Roberts (NPC) |
Join the Roberts family as they honor the memory of their daughter, Erin Roberts, and raise awareness with their annual Memorial Road Race 5k.
For registration and more information on the event you can visit the Erin Robert's Memorial Race page, or visit their Facebook.
[April 11th, 2013 blg]
Golf "Fore" Stacey
Saturday, June 29th, 2013
Spring Creek Golf Center
Cold Spring, WI
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| Stacey Vorpahl (NPC) |
Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, June 29th, 2013, in memory of their daughter, Stacey, who passed away from Niemann-Pick Disease Type C (NPC) in 2004.
This event will benefit the National Niemann-Pick Disease Foundation to support research into treatments and a cure for Niemann-Pick Disease.
View the Event page for more information!
[April 11th, 2013 blg, *updated* June 17th, 2013 blg]
Johnathan's Dreams - Cure NPC
Wine Tasting and Silent Auction Event
Fortino Winery
~ Gilroy, CA
Saturday, July 13, 2013
The 4th annual Johnathan's Dreams - Cure NPC wine tasting and silent auction event is being planned for July 13, 2013, so mark your calendars!.
The gala will raise awareness of Niemann-Pick Disease and funds for the NNPDF in honor of Johnathan Spencer (NPC).For more information, see the Event Flyer!
[Mar 8, 2013 blg, updated Apr 18, 2013 blg]
Fourth Annual Ryde 4 Tylor
Saturday, September 14th, 2013
Knickers Saloon
Dubuque, Iowa
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| Tylor White-Richardson (NPC), with his mom, Jenn White, and Brian Simon |
The Fourth Annual Ryde 4 Tylor will be held on Saturday, September 14th, beginning and ending at Knickers Saloon. The cycle ride will raise funds for research into Niemann-Pick Disease Type C in honor of Tylor White-Richardson of Dubuque and Galena, Illinois.
More information will be provided as it becomes available
[May 15th, 2013 blg]
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.
For more information about the KBCE, and to order, visit the Web site at: www.sweetdiscipline.com
[Mar 17, 2011 mem]