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Previous Fundraising Events

PREVIOUS FUNDRAISING EVENTS.

2016  |  2015

 

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Crab Cakes for Caleb

OCTOBER 25, 2016

crab-cakes-for-caleb

12/27/2016 jjb

 Living Like a Warrior 2016 – Launching Hope!

SPONSORED BY
Wylder Nation Foundation

OCTOBER 15, 2016

Wings Over the Rockies
Air & Space Museum in Denver, Colorado

Living Like a Warrior 2016

12/27/2016 jjb

10th ANNUAL 
Dillon Papier Charity Golf Tournament
Dinner and Silent Auction

SEPTEMBER 16, 2016 

PB Dye Golf Club ~ Ijamsville, MD 21754 
Dylan
DAY OF EVENT
(Subject to Change)
8:30 am Registration 9:30 am Shotgun Start

4-Person Scramble Format  |  Hole in One Prizes  |  Long Drive
Raffle and Other Prize Opportunities

Lunch will be provided | Water, Soda & Beer All Day

Dinner & Silent Auction
Immediately Following the Round of Golf

PB Dye Golf Club | 9526 Doctor Perry Road | Ijamsville, MD
Phone: 301-607-4653 |www.pbdyegolf.com

Sponsorships are Available – Contact Mike Hayden for details

CLICK HERE FOR DETAILS AND REGISTRATION FORM

Proceeds benefit the
National Niemann-Pick Disease Foundation
and our Quest for a Cure!

Thank you for your continued support!

12/27/2016 jjb

 Riley’s Run
Memorial Ride & Poker Run

In memory of Riley Corbitt

 JULY 23, 2016

CLICK HERE FOR EVENT FLYER

12/27/2016 jjb

7th ANNUAL FIGHT TO CURE NPC EVENT
Johnathan’s Dreams

Saturday, July 9th, 2016

2:00 – 7:00 pm
Fortino Winery – Gilroy, CA

Please join the Spencer-White family for the
7th Annual Johnathan’s Dreams
Fundraiser event, hosted at the Fortino Winery!

Mark your calendars for some good food,
wine tasting, 
silent auction and raffle to raise
awareness and funds 
for NPC Research.

Proceeds from the event will benefit NPC Research
in honor of Johnathan Spencer.

Check out the event flyer for more details.

12/27/2016 jjb

11th ANNUAL
Bowie Baysox Dillon Papier Benefit

Sunday, June 5th, 2016

Baysox Prince George’s Stadium – Bowie, MD

Pregame Festivities: 12:00 pm
Dillon Throwing First Pitch: 12:25 pm
Gametime: 1:05 pm

dylan

Please join us in this exciting celebration
in our 11th year of this annual fundraiser!!

Proceeds fund the
National Niemann-Pick Disease Foundation, Type C Research.

In honor of NNPDF, Bowie Baysox is providing
a Corporate Suite which includes:

1 Game Ticket, Food & Drinks for $40

Come as early as 12:00 pm to share in the festivities
and cheer on Dillon throwing out the first pitch around 12:25 pm,
followed by the game starting at 1:05 pm

Contact Maris Walker bye-mailor by phone at
301-529-6481 / 301-464-8935.

(Only tickets purchased through Maris will benefit Dillon)

Check out the event flyer for more details.

06/06/2016 jjb

4th ANNUAL  –  Golf 4 Garrett

Saturday, June 4th, 2016

Lander Golf Course  |  Lander, WY

golf 4 garrett

Come join the Hopkin family & friends for their annual Golf 4 Garrett fundraiser! Courtney & Justin Hopkin 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.

06/06/2016 jjb

4th Annual Walk for Kailey Florkiewicz 

Sunday, May 15th, 2016

Griffith/Merrillville Airport ~ Griffith, IN

Walk for Kailey 2016

Dear NNPDF Families and Friends,

It’s time again for the 4th Annual Walk for Kailey, in honor of Kailey Florkiewicz (NPC), being held this year at the Griffith/Merrillville Airport.

Come show your support and join the Florkiewicz family and friends for a fun day of walking, silent auction, shopping & airplane rides!  There are also fun kids activities like a nature scavenger hunt, family friendly walk checkpoints and great food!  Proceeds from the event will be directly donated to the NNPDF to benefit NPC research!

For more information, you can view the event flyer, or to register for the walk you can visit the website:www.walkforkailey.evenbrite.com.

05/17/2016 jjb

Boston Marathon Run in Honor of Cassandra Samborski

April 18th, 2016

Boston, MA

Ironman

Anne OConnor-Smith (Adult Type B) will run the Boston Marathon in honor of Cassandra “Cassie” Samborski (January 7, 1994 – December 9, 2015 ~ Niemann-Pick Disease Type B), who courageously fought the NPB battle for 21 years. 

“Cassie was my hero, the same age as my youngest daughter, and one of the toughest, happiest people I have met. I hope to raise awareness by being the first person with ultra-rare Niemann-Pick Type B to run the Boston Marathon.   Please help others who, like me, struggle for many years to obtain a diagnosis.  Hope for treatment begins with a diagnosis!!!” 

To donate to this fundraiser,
visit Anne’s Boston Marathon crowdrise page:

CROWDRISE.COM

National Organization for Rare Disorders, Inc. wrote – Marathon runners and rare disease community members team up to support all 7,000 rare diseases and help undiagnosed patients find answers. The funds raised for NORD will support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.

05/17/2016 jjb

Yankee

Yankee Candle Fundraiser
In Memory of Bryanna Desouza

March 7 – July 13, 2016

***  ONLINE Fundraiser  ***

Desouza
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:

  • $5.00 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!

Just go online to www.yankeecandlefundraising.com and click on seller and type in group number 99832018.

12/27/2016 jjb

 

Nici & Craig Peterson

January 2016

 

The NNPDF would like to congratulate and thank Nici & Craig Peterson on their wedding!  Nici & Craig recently held a reception and asked for donations to be made to the NNPDF in lieu of gifts!  These donations are made in honor of Garrett Hopkin (NPB) who is Nici’s nephew.

Looks like they were having a great time at the wedding!  Thank you Nici & Craig!!!

Jan 18th, 2016 ~ blg


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California Pizza Kitchen Fundraiser
Chase the Cure

Online
11/21/2015 through 12/27/2015

pizza

 

Niemann-Pick Type C is partnering with California Pizza Kitchen to raise money for NPC research.

HOW CAN YOU HELP?

Buy one or more gift cards between 11/21/15 and 12/27/15 using this link and 10% of the proceeds of all cards purchased will go to NPC research through Chase the Cure.

There’s a special bonus for you, too. For every $50 you spend, you get an extra $10 bonus card. The more you spend, the more you earn. The $10 bonus cards are valid until 2/28/16.

Gift cards have NO expiration date and can be used at any California Pizza Kitchen.

HELP US SPREAD THE WORD

  1. Send the attached flyer to your friends, family, and colleagues.
  2. Make copies of the flyer and distribute them at work or any other appropriate
    place.
  3. MOST IMPORTANTLY, we need to go nationwide. California Pizza Kitchen has more
    than 200 locations across 30 states. If you have any friends or relatives who live near
    a California Pizza Kitchen, send them the materials and encourage them to start the
    campaign where they live.

California Pizza Kitchen is great for stocking stuffers or just taking the family to dinner. They have more than just pizza. There are great salads and lots of entrees to choose from!

Click here to view the flyer

Dec 8th, 2015 ~ blg

The Wide World of Sports III ~ In Honor of JP Honsinger

Monday, November 9th, 2015

The Century House ~ Latham, NY
5:00pm – 8:00pm

Campaign image

The Honsinger family have partnered with Chase the Cure, a 501c3 started by Shannon Reedy in honor of her son, Chase and all NPC patients, to help get treatments out of the labs and into the patients who need it to save this generation of NP-C Kids, including JP. 

At this event you will enjoy your favorite stadium food while listening to the music of DJ Krazy Keith, do a little holiday shopping at their Silent Auction, visit with JP and some of his teammates from U Albany Lacrosse and Basketball and Shen Basketball and Baseball teams.  Watch Rodger Wyland give a live sportscast of the event and have fun with your friends and family.

Come out and show your support if you are in the Lantham, NY area!

Sep 22nd, 2015 ~ blg

First Person with NPD
to Attempt 140.6 Mile Ironman Triathlon

Saturday November 7th, 2015

Ironman Florida – Panama City Beach, Florida

Ironman

Anne O’Connor-Smith, an adult with Niemann-Pick Disease Type B, will be the first person with NPD to attempt a 140.6 mile Ironman triathlon.  There she will PERSEVERE to swim 2.4 miles in the Gulf of Mexico, ride her bike 112 miles on roads through Florida panhandle pine forests, and run a full 26.2 mile marathon through crowds of cheering fans in Panama City Beach as well as through Saint Andrews State Park.

She thanks her 15 time Ironman husband, Mike Smith, for encouraging her to signup, training with her, committing to do the race with her, and being her triathlon “Sherpa” for over 9 years for more than 50 triathlons including six Ironman 70.3 mile races.  She thanks her clinical trial doctor for not trying to stop her and her friends and family, especially NPD community and clinical trial nurses, for their encouragement!

Wish Anne luck – she has submitted her story for consideration as an Ironman inspirational story; if selected, this will be an opportunity for even greater NPD awareness.

To read full story and donate click here.

Anne has a $1,000 goal for this event which benefits the National Niemann-Pick Disease Foundation, and our Quest for a Cure!

[Sept 1st, 2015 ~ blg]


Running 4 Kelly – NPC

October 29th, 2015 – November 1st, 2015

Online Event

1
Kelly Thompson (NPC) and cousin Becky McGuire

Becky McGuire, cousin to Kelly Thompson (NPC) is running a half marathon in hopes of raising $1,566.00. Why that amount? That is the number of days between her and Kelly’s birthdays. She chose a number of significance to challenge herself and to push herself to do all she can to honor her.

Please support the National Niemann-Pick Disease Foundation, in these last few days of OCTOBER AWARENESS MONTH, by donating to this campaign today. This campaign will only be open for 4 days 10/29-11/1 (this represents the 4 years between Kelly and Becky).

To support this fundraiser, please visit: https://www.gofundme.com/Running4Kelly

UPDATE: GOAL SURPASSED!

Thank you so much to everyone that made this campaign a success! We did it.. .We surpassed our goal and raised $1616!

Together we will fight this disease until there one day they find a cure. Until then, raise awareness, fund research, fund family support, and etc. Do all you can for your loved ones and the entire Niemann-Pick community…

We will PERSEVERE! This was to honor you, Kelly! You are my inspiration, you are my sunshine! I love you more than words can say! ”  – Becky McGuire

[Nov 3rd, 2015 ~ blg]



2nd Annual Savor the Flavor
Atlantic Smokers Fundraiser for Dillon’s Fight

Sunday, October 25th | 3:00pm

Mt. Airy, MD

STF

If you are in the Mt. Airy, MD area on Sunday, October 25th, come out and show your support as Gary Irwin and Tim Mengel hold the 2nd annual Savor the Flavor event to help raise funds and awareness in honor of Dillon Papier (NPC).

The menu includes ~ pulled pork barbecue, roasted chicken, smoked salmon, macaroni and cheese, green beans, cole slaw Non-alcoholic drinks included, bar beverages provided for donation. Make the event more fun by inviting your friends to join!

100% of all proceeds will be given to the National Niemann-Pick Foundation to help fund research and find a cure!

Click here to view the Event Flyer!

Update: BIG ANNOUNCEMENT: Location change for the Savor the Flavor event this Sunday!  You will find the event at the LINKS OF CHALLEDON (clubhouse): 6166 Challedon Circle, Mt. Airy. *Cash bar will be available for adults, complete with drink specials just for this event!

[Oct 15th, 2015 ~ blg | UPDATED 10/23/2015]


Crab Cakes for Caleb
In Honor of Caleb Woodard (NPC)

October 13th, 2015 | 4:00pm to Close

Stoney’s Seafood House  |  Prince Frederick, MD

image1.jpeg

Join the Woodard Family in Honor of their son Caleb (NPC) for the areas best crab cakes at Stoney’s Seafood House!  Enjoy dinner and drinks at the seafood house where the crab cakes are # 1!  15% of all sales after 4:00 pm will be donated to the NNPDF in honor of Caleb Woodard!

For more information about Caleb and his journey, you can visit the family’s Facebook Community.

Come down if you’re local to show your support as we Persevere in our Quest for a Cure!

[Sept 16th, 2015 ~ blg]


Ironman World Championship

Saturday October 10th, 2015

Kailua-Kona, Hawaii

mike's Photo

Mike Smith, husband of Anne O’Connor-Smith, will be participating in the Kona Ironman World Championship this year in honor of Anne and the ASMD Community.

As he says on his fundraising page:

After 18 triathlon seasons, 100+ races (15 at IRONMAN distance), I have finally gotten a Kona slot.  My journey to this point has been an investment of time and effort.  Happily, my wife and family have been supportive.  More than just being supportive, Anne is also involved.  She often trains and races with me.

Mike and Anne have opened a fundraising page for their event, with a $1,000 goal, they are already past the halfway point! This event benefits the National Niemann-Pick Disease Foundation, and our Quest for a Cure!

Let’s show our support for Mike and Anne’s incredible spirit of Perseverance and cheer Mike along every step of the way to Kona!

[Aug 24th, 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
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 www.pbdyegolf.com.

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.

~ NEW ~
Register or donate for the event online!

Thank you for your continued support!

[May 20th, 2015 ~ blg]


5th Annual Baltimore Orioles
Dillon Papier Birthday Benefit

Saturday, August 22nd, 2015

Pregame Party: 5:30 pm – 7:00 pm | Gametime: 7:05 pm
Oriole Park Stadium

pic1   pic2

pic3    pic4

pic5    pic6

Come and celebrate Dillon Papier’s 13th birthday with his family, friends, and the Baltimore Orioles! Your support will fund critical research into treatments and a cure for the devastating, fatal disease that is Niemann-Pick Type C (NPC).

Please join us on Saturday, August 22nd, at Oriole Park Stadium. This special package includes a game ticket, hamburgers, hot dogs, sides, popcorn, peanuts, soft drink, ice tea, water and cash bar in the exclusive Camden Club from 5:30 – 7:00 p.m. As a reminder to the 15 yrs and under group, Orioles Trucker Hat Promo at the entrance gate and Postgame ‘Run the Bases’.

This event will be memorable because of you sharing Dillon’s love of baseball and celebrating his 13th birthday!

Here is a printable flyer/poster with all the details of the event.

Camden Club Hospitality and Game Tickets – $50 each. Any additional donations will be deeply appreciated.

Donations may be sent to:

NNPDF
Attn: Dillon Papier
9741 Royal Crest Circle

Dillon’s Army (family, friends, teachers, doctors) and the other NPC children THANK YOU for providing “The Gift of Hope”!

[Aug 5th, 2015 ~ blg]


10th Annual Ride for Adam

Saturday, August 1st, 2015 | 10:00am

Schnecksville, PA
Flier

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]


8th Annual Riley’s Run ~ Memorial Ride and Poker Run

Saturday, July 25th, 2015 | 10:00 am

Woodville Elementary School  |  Woodville, AL

Riley

Riley Corbitt (NPC)  |  7/27/02 – 10/29/08

The 8th Annual Riley’s Run will be held on Saturday, July 25th, to raise awareness into Niemann-Pick Disease and funding for research.  Riley’s Run is held by the American Cruisers Chapter 45 in memory of little Riley Corbitt, who passed away from the effects of Niemann-Pick Disease Type C in 2008, at the age of five.

In addition to the poker run, the event features an auction, door prizes and a live band and pizza at the end of the ride.  All proceeds benefit the NNPDF in Riley’s memory.

For more information, you can click here to view the event flyer 

[Jul 16th, 2015 ~ blg]


3rd Annual Golf for Garrett

Saturday, July 25th, 2015 | 7:30 am & 1:00 pm Tee Times

Lander Golf Course  |  Lander, WY

G4G

Come join the Hopkin family & friends for their annual Golf 4 Garrett fundraiser!  Courtney & Justin Hopkin 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
Bowie Baysox Dillon Papier Benefit

Sunday, July 19th, 2:00 pm

Prince George Stadium  |  Bowie, MD

Bowie Baysox 2012

Please invite all your friends and family to join in this exciting celebration as this event is the 10th year of her grandson Dillon’s annual fundraiser. Proceeds fund the National Niemann-Pick Disease Foundation, Type C research.

In honor of NNPDF, Bowie Baysox is providing a Corporate Suite: ticket, food, and drinks for only $40. Come as EARLY as 1:00pm to share in the festivities and cheer Dillon throwing out the first pitch approx. 1:25pm

Contact Maris Walker by e-mail or by phone at 301-529-6481 / 301-464-8935. Only tickets purchased through Maris will benefit Dillon.

You can view the event flyer for more details.

[Jul 14th, 2015 ~ blg]


6th Annual Ryde 4 Tylor

Saturday, July 18th, 2015, Noon

Knickers Saloon  |  Dubuque, Iowa

Tylor

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]


Johnathan’s Dreams Fundraiser
6th Annual Fight to Cure NPC

July 11th, 2015 | 2:00 pm to 7:00 pm

Fortino Winery  |  Gilroy, CA

Fortino

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 | 2:00 pm to 8:00 pm

Forest River Community Hall  |  Mount Prospect, IL

Hayley

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

Wylder

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]


Yankee
Yankee Candle Fundraiser
In Memory of Bryanna Desouza

March 12th- June 30th, 2015

Naugatuck, CT
~ ONLINE & Local Fundraiser ~

Desouza
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
~ONLINE NOW~

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]


Gladys Knight in Concert for DART

Saturday, May 30th, 2015

Palace Theatre, Stamford, CT

Gladys Night In Concert

On Saturday, May 30th, 2015, Gladys Knight will perform for Dana’s Angels Research Trust (DART)!  7-time Grammy Winner GLADYS KNIGHT will headline DART’s 2015 Gala Concert for NPC research! Come ride THE MIDNIGHT TRAIN… to Stamford!

The concert will kick-off with a Gala Benefit that includes an elegant cocktail reception with a pasta bar by World-Famous RAO’s Italian Restaurant, silent and live auctions, and celebrity hosts Kathie Lee and Frank Gifford. Scott Shannon of WCBS-FM 101.1 will introduce Gladys Knight!

For more information on the event and to purchase tickets: Click Here

[May 29th, 2015 ~ blg]


3rd Annual Walk for Kailey Florkiewicz

May 17th, 2015  |  12:00 pm to 5:00 pm

Griffith/Merrillville Airport  |  Griffith, IN

Kailey

Dear NNPDF Families and Friends,

It’s time again for the 3rd Annual Walk for Kailey, in honor of Kailey Florkiewicz (NPC), being held this year at the Griffith/Merrillville Airport.

Come show your support and join the Florkiewicz family and friends for a fun day of walking, silent auction, shopping & airplane rides!  There are also fun kids activities like a nature scavenger hunt, family friendly walk checkpoints and great food!  Proceeds from the event will be directly donated to the NNPDF to benefit NPC research!

For more information, you can view the event flyer, or to register for the walk you can visit the website: www.walkforkailey.evenbrite.com.

If you are also going to be in the area on May 4th, the local Texas Roadhouse is doing a Fundraiser Night where 10% of all food purchases will be donated as well!

[Apr 29th, 2015 ~ blg]


The Million Dollar Bike Ride
Raising Money for Rare Disease Research

Saturday, May 9th, 2015

Philadelphia, PA

NPC

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

The NNPDF is please to inform the wider NPC community that Team NPC is participating again this year 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!

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 come together in honor/in memory of their loved one(S) diagnosed with Niemann-Pick Disease Type C.

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 29th, 2015 ~ blg]


Caleb Woodard Charity Hocky-thon
In Honor of Caleb Woodard (NPC)

April 4th, 2015

The Garden’s Ice House  |  Laurel, MD

Woodard

The Woodard family out of Maryland is holding their first fundraiser in honor of their son, Caleb Woodard, who was diagnosed with Niemann-Pick Disease type C in 2013.

This event, the Caleb Woodard Charity Hocky-thon, will feature 12 one hour ice hockey games at The Gardens Ice House in Laurel, MD. The money raised on their GoFundMe page will cover base costs so team fees and donations collected at the event will be directly donated to the NNPDF for NPC research.

Let’s show our support and welcome this family into our community!

[Mar 4th, 2015 ~ blg]


Infiniti Coaches Charity Challenge – 2015

January 5th – March 15th, 2015

R4

Dear NNPDF Families and Friends,

The entire Niemann-Pick Disease type C  community has been offered 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 15th 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! (Three of the Smith family children have been diagnosed with Niemann-Pick Disease type C ~ Braden, Riley and Keaton ~ thus BReaK-Thru Fund.)

Click Here to Vote for Matt Painter!

This on-line voting contest is sponsored by, The Infiniti Coaches Charity Challenge, in for ten (10) weeks, the nation’s top coaches will be counting on fans like you to vote for their favorite charity. Vote for your coach’s favorite charity. Help increase their chances by sharing with your friends. The coaches receiving the most votes gain a spot in the finals, with the winning coach receiving $100,000 toward his charity (each coach will get at least $1,000 for his favorite cause). So start voting now!

Matt Painter, Purdue University Coach and the Smith Family BReaK Thru Fund are working together with the NPC community to vote Matt Painter into the final round! With your help, NPC research WILL garner $100,000, but only if you vote daily! We CAN do this if everyone gets behind this project.

The first round of voting opened on January 5th, 2015 and continues through January 25th, 2015 when 24 Coaches out of the initial 48 will advance to round two of four total.  Vote daily for Matt Painter to ensure he makes it to the final round!

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!

[Jan 22nd, 2015 ~ blg ~ UPDATED 03/04/2015]



01/06/2017 Transferred  |   jjb