NNPDF Promotional Products Available
Great fundraising items
or thank you gifts for volunteers!
Upcoming Fundraising and Awareness Events
Lexington High School and Middle School
Releasing Balloons for Students in Clinical Trial
January 13th, 2014, 3:00pm
In Honor of the Ruthven Rockstars participation in the Cyclodextrin trial at the National Institutes of Health, the Lexington High and Middle Schools released 500 balloons on Monday, January 13th.
Cody & Kayla Ruthven are making their journey to Maryland for a two week stay to participate in the current drug trial for Cyclodextrin. They are two of 9 children participating in the trial. After the first two weeks, they will return to the Institute once per month to receive the drug in hopes that it will save their lives.
The family has a blog specifically for their experiences while in the trial that can be found here: Cody and Kayla: On the Road to a Cure.
We wish Cody and Kayla the best of luck and look forward to sharing in this journey through their blog!
[Jan 15th, 2014 ~ blg]
2014 Medford Polar Plunge
January 22nd, 2014
Jackson Aquatic Center
Central Point, OR
Peyton (NPC), Kayla (NPC), and Jonah Hadley
The Hadley's are participating in the 2014 Medford Polar Plunge to raise funds for their local Special Olympics, while helping to raise awareness for Niemann-Pick Disease.
Team Hadley Hope are looking for team members! If anyone is interested, here's how you can help:
- Consider signing up and raising at least $50 for Special Olympics.
- Or consider donating directly to the cause. Any amount would be greatly appreciated!
The family's personal goal is $250. You can visit Team Hadley Hope's page and choose to either Join the Team or Give Now!
[Jan 17, 2014 ~ blg]
Yankee Candle Fundraiser ~ In Memory of Bryanna Desouza
February 1st - June
~ONLINE & Local Fundraiser~
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!
The online store is officially Online!
- Visit www.yankeecandlefundraising.com
- Enter Group # 99832018
- Click "Start Shopping" to begin!
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 ]
NPD Community Worldwide Unite!
We have an unparalleled opportunity to raise $100,000 towards NPC research, but it will only happen if YOU take action and encourage others to do the same. It's easy! Vote once a day online between now and March 16th to push the Trent and Julie Smith Family Foundation "BReaK Thru Fund" for NPC research to the finish line and the top prize of $100,000.
Click Here to Vote!
Matt Painter, Purdue University Coach and the Smith Family BReaK Thru Fund are in the Final 4 of the Coaches Challenge. With your help, NPC research could get $100,000, but only if you vote daily! Coach Painter is currently in 3rd place, but we CAN do this if everyone gets behind this project. Only 1st place wins the 100,000 dollars.
We've started this event as a daily reminder for you to vote leading up to the final day on March 16th, 2014. Share this with your families, share this with your friends and encourage them to do the same. Alone we are rare, but together we are strong!
[March 4th, 2014 ~ blg]
World Rare Disease Day Celebration ~ 2014
Notre Dame Conference Center
February 15th, 2014 9am-6pm
In celebration of World Rare Disease Day on February 28th, Notre Dame is hosting a public event at their conference center. The event is free, but you must RSVP to attend by the deadline of February 9th, 2014.
If you are a rare disease patient, family member or advocate and would like to share your story, see the contact information on the Event Flyer.
The conference will also include:
- A forum on providing emerging experimental therapies led by local rare disease patients and their physicians
- A session on the global perspectives of rare disease patient families Updates from ND faculty and visiting researchers/clinicians on the latest research in lysosomal storage disorders, rare cancers and more broadly in rare inherited syndromes
- ND Student research in establishing natural histories for rare diseases and developing a database for patient medical records
- A poster session featuring Notre Dame student and faculty research in rare diseases
- Other activities including a rare disease quiz to build awareness for rare diseases
- Child care will be provided
To view the flyer for the event, and for information about making an RSVP: Click Here.
[Feb 5th, 2014 ~ blg]
5K For Dillon Papier
Sunday, March 30th, 2014
Ijamsville, MD 21754
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.
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.
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]
22nd Annual NNPDF Support and Medical Conference
~ San Francisco, CA ~
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]
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]
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.
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)
Sales to Benefit NNPDF
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]