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Current Fundraisers

NNPDF Promotional Products Available
Great fundraising items or thank you gifts for volunteers!

2013 October Awareness Month events and activities

Recent fundraising and awareness events hosted by families and friends


Upcoming Fundraising and Awareness Events



Yankee
Yankee Candle Fundraiser ~ In Memory of Bryanna Desouza
February 1st - June 31st, 2014
Naugatuck, CT
~ONLINE & Local Fundraiser~

Bryanna
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!

Yankee Candle Fundraising ~ NNPDF Storefront
~ONLINE NOW~

The online store is officially Online

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 ]


2nd Annual Parseghian Cup
Saturday, April 5th, 2014 ~ 7:00 p.m.
Stinson Rugby Field
Notre Dame, IN

Parseghian Cup

Please join the College of Science, the Ara Parseghian Medical Research Foundation, and the Notre Dame Rugby Team for the second annual Parseghian Cup, a rugby game between the Fighting Irish and University of Arizona Wildcats to raise money for Niemann-Pick Type C (NPC) disease.

A generous donor has pledged to give $25.00 to NPC research for every person who attends the game, up to $25,000! There will also be free giveaways and a chance to win an autographed Ara Parseghian rugby ball.

Let's help make this the largest attended Notre Dame Rugby game in history by bringing a big group of family, friends and neighbors to help raise money for NPC research!  Their goal is to get 1,000 people at the game so they can earn the entire $25,000!

2nd Annual Parseghian Cup Rugby Event Poster

[Mar 31st, 2014 ~ blg]


UPDATE ~ Rain Date ~ Event Postponed Due to Rain

5K For Dillon Papier
**Now to be held on: Sunday, April 6th, 2014
Ijamsville, MD 21754

5K For Dillon Papier
Sunday, March 30th, 2014
Ijamsville, MD 21754

Papier Family
Darrile, Mark & Dillon (NPC) Papier.

The Urbana High School Interact Club is hosting a 5K and 1K family run in honor of Dillon Papier (NPC) on Sunday, May 30th. **NOTE:  Rain Date ~ Event Postponed to:  Sunday, April 6th, 2014**

Run for the Cure will feature two races. Starting off the event is the 5K Hybrid run at 9 a.m., designed to be family friendly. The run will traverse many terrains, including grass and concrete. At 10 a.m. there will be a 1K family walk. A celebratory picnic and a children’s pick-up wiffle ball game will be held after the race.

Raffle tickets will be sold at the event, for $1 per ticket. Raffle prizes include a month-long membership at Sarge Athletics training facility, and two baseball lessons with a pro baseball player. Each of the prizes are valued at $100.

All money that is raised from this event will be donated to the National Niemann-Pick Disease Foundation. The Interact Club’s goal is to raise $5,000.

Click Here for the Event Flyer

To register to run: Click Here

The Urbana Town Courier also wrote an article about the event you can find: Here

[March 10th, 2014 ~ blg]


National Guard Most Inspirational Athlete 2014 ~ In Honor of David Coppola
Final Round ~ April 10th, 2014 -April 15th

David
David Coppola (NPC)

Starting today you can vote for David Coppola in the National Guard Most Inspirational Athlete!

Voting for the final round opens at noon and goes through April 15th. If David wins, he will receive a feature article on USA TODAY High School Sports, the Inspiration Trophy and In-school Presentation, along with $1,000 donation to his school’s athletic department.

No sign up is required and you can vote as many times as you want, so let's help recognize David's hard work and Perseverance by voting today!

Vote here!

[Apr 10th, 2014 ~ blg]


Boston Marathon Run ~ in Memory of Erin Roberts
April 21st, 2014
Boston, MA

E

Erin Roberts (NPC)
4/5/1980 ~ 12/1/2004

Ryan Kelly, cousin of Erin Roberts (NPC), who lost her battle in 2004, is taking part in the elite 2014 Boston Marathon in her memory.  Having been inspired by his cousin's strength as she battled Niemann-Pick Disease, Ryan too is working hard to not only inspire countless others as his cousin has, but to raise awareness and funds for NPC research in Erin's name.

"She will always remain an inspiration to me and my family.  She will certainly be with me as I cross the finish of the Boston Marathon." - Ryan Kelly

Ryan hopes to raise $100 per mile he runs during the event for a total of $2,620.  As of the posting of this event, he is at $2,326.00, with only $294 left to meet his goal!

If you wish to contribute to the run, visit Ryan's GoFundMe donation page. He is also updating the page with commentary about his journey to the Boston Marathon and his experiences along the way. 

We are very proud of Ryan and his efforts.  Know that all the NPD community is behind you and with you as you cross that finish line.

UPDATE: Read the article recently run in the Hanover Mariner about Ryan's run in Erin's memory.  Making Strides in Erin's Memory.

[Mar 24th, 2014 ~ blg ~ Updated: Apr 11th, 2014 ]


Boston Marathon ~ Running for Rare Diseases
April 21st, 2014
Boston, MA

Poster

For the 8th year straight, Phil Maderia is running in the Boston Marathon as part of the Genzyme Marathon Team.  This year he continues running in Memory of Wylder Laffoon (NPA ~ 05/15/09 - 07/20/12).

They're not only raising awareness, but money for a very special program. Last December, Genzyme and the Genzyme Marathon team, in partnership with the National Organization for Rare Disorders (NORD), announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program.

Phil's goal is $2,500, which he has almost hit the halfway mark! You can donate to this great cause by visiting Phil's Boston Marathon donation page.

[April 10th, 2014 ~ blg]


 

The Million Dollar Bike Ride ~ Raising Money for Rare Disease Research
Saturday, May 3rd, 2014
Philadelphia, PA
lNPC

ALERT ~ $1 for $1 Match Opportunity for NPC Research!

The NNPDF is please to inform the wider NPC community of an opportunity to raise funds directed to NPC research which will result in a “$1 for $1” match.  Under a program established at the University of Pennsylvania; Center for Orphan Disease Research and Therapy is hosting an Annual Cycling event to raise funds to be directed towards rare disease research!   The Million Dollar Bike Ride will raise research funds for the Center for Orphan Disease Research and Therapy at Penn who, in turn, will match the money raised by each team and then award a research grant for each disease once the team meets the $17,500 mandated minimum!

Three NPC families, near the University of Pennsylvania, have joined forces to work collaboratively towards reaching the combined $17, 500 goal to ensure the “$1 for $1” match for NPC Research.  Each family has created “Bike Teams” in honor/in memory of their loved one(S) diagnosed with Niemann-Pick Disease Type C:

Team ~ “i Pedal 4 Chad”:  In memory of Chad Mayo (NPC Feb 2, 1974 ~ Oct 25, 2013); Team Captain:  Cory Mayo ~ Chad’s little brother.

Team ~ “Chase the Cure”: In honor of Chase DiGiovanni (NPC ~ 4 years); Team Captain:  Shannon Reedy ~ Sweet Chase’s Mommy.

Team ~ “Pedaling 2 Persevere”:  In honor of the Coppola brothers, Andrew (NPC ~ age 20 years) & David (NPC ~ age 18 years).

In addition, they have created:

Team ~ “Team NPC”: In support of all loved ones diagnosed with Niemann-Pick Disease Type C.

Their current goal is a combined $17,500.00, which if reached would be matched dollar for dollar by University of Pennsylvania. This is a $35,000 grant for NPC research! Let's not stop there though!

  • $17,500 raised would guarantee a dollar for dollar match totaling $35,000 for NPC Research!
  • $20,000 raised would guarantee a dollar for dollar match totaling $40,000 for NPC Research!
  • $25,000 raised would guarantee a dollar for dollar match totaling $50,000 for NPC Research!

The limits are endless on how much we could raise for NPC research!

This is an amazing opportunity to not only honor your loved ones diagnosed with Niemann-Pick Disease Type C but to make a difference in research while maximizing your donation!  A Dollar for Dollar match is within our reach!

Visit the Donate for NPC website to show your support & make a donation today!

Please Note: The NNPDF is currently funding Dr. Charles Vite, who has the NPC Cat Colony at the University of Pennsylvania School of Veterinary Medicine.

[April 1st, 2014 ~ blg]


National Mobility Awareness ~ Local Hero ~ in Honor of Stephanie Moses
March 11th - May 9th, 2014

Entry Photo for Stephanie Moses - Rockford, IL
Stephanie Moses (NPC)

We want to encourage our community to vote for Stephanie Moses, who has a great opportunity to win a mobility van to help make transport easier for her and her family.

Click this link to vote and read her story.

It only takes a moment to sign up and you can vote once a day from now through May 9th, 2014. There is still plenty of time to show your support for Stephanie!

[Apr 10th, 2014 ~ blg]


22nd Annual NNPDF Support and Medical Conference
~ San Francisco, CA ~
Thursday, July 31st ~ Sunday, August 3rd, 2-14

e

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]


~On hiatus till further notice~

Dillon's Fight

Frederick, Maryland

We are excited to announce that

Foster's Grille

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.

Fundraiser Candle

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.

Ducks For Bucks Candle

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

KBCE

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]