NNPDF Current Fundraising and NPD Awareness Events

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Fundraising and NPD Awareness Updates


Dateline: 06/29/2015

Have you been thinking about hosting a fundraiser to benefit the National Niemann-Pick Disease Foundation and raise awareness of Niemann-Pick Disease? Not certain where to start or how best to get your idea off of the ground?  The NNPDF CENTRAL OFFICES ~ is here to help you with ideas, resources and support! 

The “NNPDF Fundraising Packet” is a unique guide developed to support our Niemann-Pick Disease Family Community to assist you in getting started and walks you through to the completion of your fundraiser or awareness event.


The NNPDF “Recipes for Success” Cards are a great way to help you pick the fundraiser that is just right for you and links you back to a sponsor at the foundation who held a similar event and had success.

One fundraising idea highlighted in the “Recipes for Success” cards is an event that will serve a double purpose and help to clean out your house at the same time!  If that peeks your interest, then a “Garage Sale Fundraiser” is the event for you!

The NNPDF “Recipes for Success” Cards will give you all the ingredients (supplies) and directions (instructions) needed to help you have a successful event.  The “Recipe Cards” also provide you with “quick tips” addressing advertising content, PR timelines and helpful hints to ensure you get the word your community. WAIT ~ there is more ~ should you still need suggestions or support ~ Chris Klauer, at the NNPDF Central Office is simply an e-mail or phone call away to answer any questions that you may have!

Remember….not only do you clean out your house, basement and garage but you also raise money and awareness in honor of the loved one in your family living with Niemann-Pick Disease.

Wish to raise awareness in the community with posters that speak to the heart of the foundations efforts on behalf of your loved one faced with the heartbreaking diagnosis of NPD?  If you are interested in utilizing posters to advertise and/or educate community members or attendees at an event, then the NNPDF Central Office can be of assistance!  The foundation has four different posters available to all of our family membership for a nominal cost plus shipping (h24” X w18”). Click here for the order form

This week we turn the spotlight on the “Research Is Our Only Hope” poster. This poster highlights the many faces of our NPD children and young adults bravely taking on the challenges of NPD day-after-day! 

You can order these posters, NNPDF Informational Brochures, Newsletters and Persevere Wristbands from the Central Office.  Just use this this form and you will be all set for your event.



Don’t forget that the upcoming fundraiser’s that the NNPDF Central Office is aware of are located here  The NNPDF Fundraising Services Plan outlines how the foundation can support you further in your efforts as well.

Don’t forget, if you are hosting an event that either raises funds for the NNPDF or provides awareness for Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at: so that she can assist you with events and activities! 

[June 29th, 2015 ~ blg]


Fundraising and NPD Awareness Updates
Dateline: 06/22/2015

August of 2015 will mark the 13th year that the National Niemann-Pick Disease Foundation (NNPDF) has held an annual “First-Time Fundraiser” contest.  This annual contest serves as a way to encourage and recognize families who have taken their first steps towards raising funds in support of the programs and services provided by the National NPD Foundation. 

The grand prize winner of the annual contest receives a complimentary hotel room for the three nights of the annual Family Conference ~ Thursday, Friday and Saturday!  This year to be held in Chicago, Illinois!

Contest rules are simple:

  • Entrants must be first-time fundraisers with proceeds being raised on behalf of the NNPDF.
  • Fundraising results & receipts must be submitted to the NNPDF Central Office by June 30th, 2015.
  • The 2015 contest year runs from July 1, 2014 —June 30, 2015.  (Events must have been held during this time period.)  First-Time Fundraiser Family Participants (ie: entrant) may have hosted more than one event during that timeframe, with proceeds from all events in that timeframe being forwarded to the NNPDF and counting toward the entrant’s total.
  • NNPDF board members and employees, as well as their relatives are not eligible to participate.
  • The First-Time Fundraiser who raised the most money for NNPDF wins the grand prize three complimentary nights at the Loews Chicago O’Hare Hotel for the 2015 23rd Annual Family Support and Medical Conference! 

If you believe that your fund raising events and efforts may qualify you to be considered in the 2015 NNPDF Annual First-Time Fundraiser Contest, please be certain to contact the foundation Central Offices to inquire as to your family’s eligibility.  Also, PLEASE do not wait to make your hotel reservations — reserve your hotel reservations now to avoid disappointment in not being able to take advantage of the foundations contracted room rates.  If you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference (August 6th, 7th & 8th, 2015).

Fundraising is vital for moving research forward.  If you have been thinking about fundraising, this is the time to jump in.  The NNPDF offers a Fundraising Packet, a Guide to Getting Media Coverage, and “Recipe for Success Cards” to help you get started plus personal Central Office staff support and planning assistance from start to end.

Please contact Chris Klauer, Family Services & Marketing Coordinator at or call the Central Offices at:  920-563-0930 for more information or assistance.

On May 17, 2015 the 3rd Annual “Walk for Kailey Florkiewicz” occurred in Griffith, Indiana in honor of Kailey (NPC ~ age 11 years).  This exciting event was, once again, a huge success and was capped off by Kailey’s sister, Kenzie, singing the National Anthem!  The rain held off and great fun was had by all.  The NNPDF is grateful to the Florkiewicz family and their supporters in choosing the foundation as the recipient of the event proceeds!  Heartfelt Thanks!   

Interested in hosting a “Run/Walk” event of your own to benefit the NNPDF but don’t know HOW or WHERE to begin?  Simply contact the NNPDF Central Offices ~ we have a “how to” “Recipe for Success” fundraising tool PLUS “one-on-one” staff assistance to address your questions and help to get your event moving forward towards certain success!


Last week the Central Office Staff highlighted all of the upcoming fundraiser’s slated to be held this summer that we are aware of:

If you are you hosting an event that either raises funds for the NNPDF or provides awareness into Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at: so that she can assist you with events and activities! 

[Jun 22nd, 2015 ~ blg]

Current NNPDF Fundraisers and NPD Awareness Events


Yankee Candle Fundraiser ~ In Memory of Bryanna Desouza
March 12th- June 30th, 2015
Naugatuck, CT
~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), both 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:

  • $5.99 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

The online store is officially Online

Judy's in person, local ordering will start on March 12th-March 27th, 2015 if you don't want to purchase online and are local to Naugatuck, Connecticut.

[Jan 24th, 2015 ~ UPDATED: Mar 3rd, 2015 ~blg]


Johnathan's Dreams Fundraiser ~ 6th Annual Fight to Cure NPC
July 11th, 2015 | 2:00pm to 7:00pm
Fortino Winery
Gilroy, CA


Come join the Spencer-White family for the 6th Annual Jonathan's Dreams Fundraiser, hosted at the Fortino Winery! 

Mark your calendars for some good food, wine tasting, silent auction & raffle to raise awareness and funds for NPC research! Proceeds from the fundraiser will go towards NPC research in honor of Jonathan Spencer!

For more information on this event, see the full Event Flyer!

[June 3rd, 2015 ~ blg]


Family Fun Day In Support of Hayley Koujaian
Saturday, July 11th, 2015 | 2:00pm to 8:00pm
Forest River Community Hall
Mount Prospect, IL


Join the Koujaian family on Saturday, July 11th for their Annual Family Fun Day! This fundraiser is in Honor of Hayley Koujaian (NPC) and proceeds will go to support Neimann Pick disease, Type C research and clinical trials at Rush University Medical Center.

The day's events has something for everyone, including games for both adults and children, good music, good food , raffles, and a silent auction.  The big ticket raffle item this year is TWO tickets to see Taylor Swift in concert on July 19th at Soldier Field!

For more information about the event, visit the Koujaian family's page on the Rush University website.

[June 3rd, 2015 ~ blg]

2nd Annual Living Like a Warrior Gala
Saturday, July 11th, 2015
Denver, CO


Mark your calendars for the second annual “Living Like a WARRIOR” Gala supporting Wylder Nation Foundation.

Join the Wylder Nation for a sit down dinner, open bar, auctions and inspiring updates on progress from the foundation since last years gala. Come together to be a part of something bigger, and fundraise to accelerate the discovery of treatment options for children battling Lysosomal Storage Disorders.

For more information about attending, visit the Wylder Nation event web page.

[June 3rd, 2015 ~ blg]


6th Annual Ryde 4 Tylor
Saturday, July 18th, 2015, Noon
Knickers Saloon
Dubuque, Iowa


The 6th Annual Ryde 4 Tylor will be held on Saturday, July 18th, departing from Knickers Saloon, Dubuque, Iowa, at 12:00 noon, sharp.   The ride is scheduled in memory of Tylor White-Richardson (09/11/1996 ~ 12/12/2013)

All proceeds will go to the NNPDF to benefit NPC research in Tylor's memory.  Come show your support in our quest for a cure!

[May 21st, 2015 ~ blg]


3rd Annual Golf for Garrett
Saturday, July 25th, 2015 | 7:30am & 1:00pm Tee Times
Lander Golf Course
Lander, WY


Come join the Hopkin family & friends for their annual Golf 4 Garrett fundraiser!  Courtney & Justin Hopkins are holding the event in honor of their son, Garrett (NPA/B).

This is a 4-person scramble format tournament that includes team & hole prizes, as well as, dinner and a silent auction. All proceeds from the fundraiser will come to the NNPDF to support ASMD research through the Foundation.

To register for the event, visit the Golf 4 Garrett website, and feel free to like the fundraiser on Facebook.

[Jun 30th, 2015 ~ blg]


10th Annual Ride for Adam
Saturday, August 1st, 2015 | 10:00am
Schnecksville, PA

The 10th Annual Ride for Adam and Family Picnic will be held on Saturday, August 1st, 2015at the Schnecksville Fire Company Pavilion, 4550 Old Packhouse Road, Schnecksville, PA.  The day will include great entertainment and fun for the entire family, with proceeds benefiting the NNPDF and Support of Accelerated Research (SOAR)  in honor of Adam Recke (NPC). 

Registration for the non-stop poker ride begins at 10:00 a.m., with the ride taking off at noon.  The picnic will be from 2:00 - 8:00 p.m., with live entertainment during the same hours.  The event includes Basket raffles, 50/50 raffles, hamburgers, hot dogs, beverages and more will be available. 

Tickets for the event are $25.00, with children 15 and under attending free.   Flyer/poster   

[June 4th, 2015 ~ blg]


9th Annual Dillon Papier Charity Golf Tournament, Dinner and Silent Auction
PB Dye Golf Club ~ Ijamsville, MD 21754 
Friday, September 18th, 2015

Dillon Papier (NPC)

This year's annual Dillon Papier Charity Golf Tournament is scheduled for Friday, September 18th, 2015.  Registration will begin at 9:00am, with a shotgun start at 10:00am. 

This is a 4-person scramble format tournament, with prizes for closest to the pin, longest drive, etc., plus raffles, gift bags, and other prize opportunities. 

The event will be held at PB Dye Golf Club, 9526 Doctor Perry Road, Ijamsville, MD, 21754; Tele: 301-607-4653.  Visit

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 contact Mike Hayden for details.

This event benefits the National Niemann-Pick Disease Foundation, and our Quest for a Cure!

Details and registration forms are available here.

Thank you for your continued support!

[May 20th, 2015 ~ blg]


Willow Wicks Candles

Breann Chavez (NPC)
02/10/2003 - 07/08/2006

Lisa Chavez of New Mexico and Mom to Breann (who passed away in 2006 at age 3 from NPC), hand-crafts the special PERSEVERE candles to benefit the NNPDF. Each Turley Tot Candles has a different picture of a precious moment captured with a pleasant scent to complement. 

$10 of every candle from the Turley Tot Collection will go to the National Niemann-Pick Disease Foundation in a fight to one day cure Niemann-Pick Disease.

Click here to view the Turley Tot Collection and view other candles made with love by Lisa Chavez


~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]

2014 October Awareness Month events and activities

Recent fundraising and awareness events hosted by families and friends