Events
Hosted on Behalf of the NNPDF or CCNNPDF and our Families
Upcoming Events
2009 and 2010 Events
Origami Owl ~ Jewelry Bar - In Memory of Daniel Flinton
Elks Lodge
Ballston Spa, PA
Saturday, November 2nd, 2013 11:00am-1:00pm
In Memory of Daniel Flinton (NPC)
Join us in support of Jill Flinton's Fundraiser to bring awareness to Niemann-Pick Disease, where 20% of the proceeds will go to the National Niemann-Pick Disease Foundation.
Come an join us at the Elks Lodge in Ballston Spa. We will have special giveaways.
Can't make it? Don't worry. You can place an order online at http:// jessicawells.origamiowl.com / and be sure to select "Jill Flinton's Niemann-Pick Fundraiser Jewelry Bar" at the check out.
[Oct 3rd, 2013 blg]
Chase the Cure - October Awareness Contest
Entries due by October 28th, 2013
| Chase DiGiovanni (NPC) & Cameron Reedy |
The Reedy/DiGiovanni family are running an awareness contest with a prize for three kids that have NPD affected kids/sibs in their lives! Everyone who participates has the same chance at winning. This is just an awareness contest, no donations being sought.
This contest is for the siblings, friends and family of loved ones with Niemann-Pick Disease. You must be under 18 to enter.
For more information about participating visit: Chase the Cure ~ October Awareness Contest
[Oct 3rd, 2013 blg]
October Awareness Event ~ Heinze Family Thirty One Party
Facebook Event
Tuesday, October 1st, 2013 - Sunday, October 27th, 2013
| Faith (NPC) & Katie (NPC) with parents, Tim & Liz Heinze |
Liz Heinze is hosting a Thirty-One party to raise money for her family and Nurse's Aides to attend the 2014 NNPDF Support and Medical Conference.
Thirty-One Gifts provides customizable bags and other stylish quality gifts. Between October 1st and October 27th you can place your orders online at the consultant page, linked on the Facebook Event page.
Click Here to view the Facebook event .
We've also been told that every Ovid-Elsie Junior High Varsity football games in October, the Heinze girls will be wearing jerseys that are white with periwinkle blue writing and the famous bow to raise awareness for Niemann-Pick Disease! Picture below!
[Oct 17th, 2013, updated Oct 18th, 2013 ~blg]
Ghost Train Rail Trail 100 Mile Race
Saturday, October 26th, 2013
Milford, NH
Phil Mederia Wylder Laffoon (NPA)
The Genzyme marathon team embarks on a 26.2-mile journey each year on behalf of patients living with rare diseases. Since 2008, a team of Genzyme employees has run the Boston Marathon for the National Organization for Rare Disorders (NORD). This year the team raised over $70,000 for NORD to support their project "Promote Early Diagnosis."
As part of this team, Phil Maderia, an engineer at Genzyme, ran in memory of Wylder Laffoon (05/15/09 - 07/20/12, NPA) at this years Boston Marathon.
Moving forward, Phil will now not only run this year's Ghost Train Rail Trail 100 Mile Race , in Milford, NH, with Wylder on the forefront of his mind and prayers …. He will now run for Trek, Jacob, Kaitlyn, Quinn, Riley, Faith, Lily, Amber and all NPA patients!
View Shannon Laffoon's blog post on this Upcoming Event
If that isn’t enough, Phil is putting on a mini-fundraiser for this marathon looking for virtual runners. All of the proceeds are going to go to Wylder Nation Foundation! Shannon will give us more details on this as it becomes available.
A Very Vaughn Wedding!
Friday, October 18th, 2013
| Mike Vaughan & Mariann Katharina |
We want to send out a big congratulations to the Vaughan family today!
Mike Vaughn, son of Tammy Vaughn (CCNNPDF Chair and NNPDF Secretary), is getting married to Mariann Katharina today in Niagara Falls!
The newlyweds have asked that in lieu of gifts, that a donation be sent to the CCNNPDF instead. The Foundation appreciates your kindess and wishes you the very best on your big day!
Grease Family Dance - in Honor of Ty Quandt!
Mountain View Elementary
Puyallup, WA
Friday, October 18th, 2013 6:30-8:30pm
In celebration of Ty Quandt's 17th birthday, Mt. View Elementary proudly presents it'a annual Family Dance! This year's theme - Grease!
Proceeds to benefit Ty Quandt and the National Niemann-Pick Disease Foundation. Persevere is the word!
Click HERE for the full flyer.
Click HERE to view the Mt. View Elementary School Student Report
[Sept 9th, 2013 blg]
Walk, Stroll, Roll & Family Picnic
To Benefit the Andrew Coppola Foundation
Langhorne, PA
Saturday, October 12th, 2013 9:00am-3:00pm
It is with excitement that the Coppola Foundation looks forward to hosting the next family fun event. On Saturday October 12, 2013 we invite you to participate in a Walk, Stroll, Roll and Family Picnic.
So, what is this event all about? The Coppola family have reserved the largest Pavilion at Core Creek Park, and will provide BBQ style food and drink, entertainment, and will take two group style walks along the walking trails.
In addition, Brian and Kim will have a question and answer session to provide information about Niemann Pick Disease, current treatments, and ongoing research efforts.Click HERE for the full flyer.
[Oct 3rd, 2013 blg]
Casual Day for a Cause - In Memory of Scott Marocco
Friday, October 4th, 2013
| Scott Marocco (NPC) |
We received this e-mail from Lauren Grodin, an NNPDF Board Member. Her mother, Susan Gavsie of West Palm Beach, Florida, is holding an event in memory of her son Scott for October Awareness month at her place of employment.
As many of you know, I had a son, Scott, who passed away in June 2000 at the age of 13 from a rare genetic disease, Niemann-Pick Type C.
This Friday's "Casual Day for a Cause" is to honor Scott's memory and raise money that will go towards research to find a treatment and, eventually, a cure for this progressive, fatal disease.
My daughter, Lauren, is a pediatric psychologist and on the Board of Directors for the National Niemann-Pick Disease Foundation ("NNPDF"). If you would like to read a little about Niemann-Pick, the link to the website is: / .
You can make your checks payable to" NNPDF" and I will forward all donations to the Foundation with a note that you have made a donation in memory of Scott.
Thank you so very much for your support of this cause that is near and dear to my heart!
Susan Gavsie, Human Resources
Holland & Knight
West Palm Beach, FL
www.hklaw.com
[October 5, 2013 nmh]
7th Annual Dillion Papier Charity Golf Tournament, Dinner and Silent Auction
Friday, October 4th, 2013
Hollow Creek Golf Club
Middletown, MD
|
| Dillon Papier (NPC) and Family |
This year's annual Dillon Papier Charity Golf Tournament is scheduled for Friday, October 4th, 2012. Registration will begin at 9:00 a.m., with a shotgun start at 10:30.
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 Hollow Creek Golf Club, 50 Glenbrook Drive, Middletown, MD, 21769; Tele: 301-371-0400. Visit www.hollowcreekgolfclub.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. . www.nnpdf.org
Thank you for your continued support!
Planning to do a Golf Tournament? Click here for the Recipe for Success~Golf Tournament card!
[June 27th, 2013 blg]
Teller Family Rummage Sale ~ In Memory of Roy Teller
Early October, 2013
San Diego, CA
| Dylan Teller at Rummage Sale |
The Teller family held a rummage sale in memory of Lil Roy Teller early in the month as part of October Awareness month! All proceeds to be sent to the NNPDF.
They intend to do another before the month is up. We will share this event when more information becomes available.
Planning to do a garage sale? Click below for the Recipe for Success~Garage Sale cards!
[October 4th, 2013 blg]
Ty Quandt's Birthday ~ Make a Donation in his Honor for October Awareness
October, 2013
| Ty Quandt (NPC) and friend Cindy |
The Quandt family is asking friends and family to make a donation to the National Niemann-Pick Disease Foundation in honor of Ty's 17th birthday and for October Awareness month!
You can make a donation any day in the month of October in honor of Ty Quandt via:
- Network for Good (for credit card/Paypal transactions)
-
Mail checks to:
The National Niemann-Pick Disease Foundation
PO Box 310
Fort Atkinson, WI 53538
Make sure to specify that the donation is in honor of Ty Quandt to make sure it is designated correctly.
[October 4th, 2013 blg]
Wisconsin Proclamation ~ October Awareness Month in
Honor of Stacey Vorpahl
October, 2013
Fort Atkinson, WI
| Stacey Vorpahl (NPC) |
Wisconsin is recognizing that October is Niemann-Pick Disease Awareness Month in honor of Stacey Vorpahl.
To read more about Stacey's story: Click Here
Hoping to get October Awareness month recognized in your state? Click here to find out how!
[October 4th, 2013 blg]
October Awareness Month Project ~ Wylder's Poster
All Month Long!
| Wylder Laffoon (NPA) |
Shannon Laffoon put together the above poster of things you can do this month to Honor her son, Wylder, and all NPD families who Persevere!
[Oct 17th, 2013 blg]
Lia Sophia Fundraiser in Honor of Monica Taillefer
Online Event
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| Princess, Monica Taillefer (NPC) |
In honor of Angel Princess Monica Taillefer and the 12th Annual National Niemann-Pick Disease Awareness Month, Rachelle Vo-Ngoc, friends of the Taillefer family is holding a Lia Sophia Jewelry fundraiser.
Rachelle is a Lia Sophia Advisor and has decided that for the entire month of October, all of her earnings will be donated to the Niemann-Pick Disease Foundation. This means that 30% of all jewelry sales (before taxes and shipping) will be donated.
For those of you that aren't familiar with Lia Sophia, here is a brief explanation from Rachelle:
Lia Sophia jewelry is high-quality jewelry that is backed by an unrivaled Lifetime Replacement Guarantee. This means that every single piece of jewelry in the catalog is backed by this guarantee. There are many styles to suit everyone's taste, so take a minute and browse through the catalog.Click here to view the Facebook event and Lia Sophia Catalog
[Oct 3rd, 2013 blg]
Patterson/Martin Wedding
Sunday, September 15th, 2013
Eagle Ridge Golf Club
Gilroy, CA
| Tara Patterson & Ray Martin with (stepdaughter) Niah holding a photo of Bailey (NPC) and Brianna (NPC) Patterson |
Come join in the happy event when Tara Patterson weds Ray Martin on September 15th!
Tara wanted us to share that the wedding favors for their wedding will be a donation to the National Niemann-Pick Disease Foundation in Memory of Bailey Grace (NPC) and Brianna Michelle (NPC) Patterson.
[August 30th, 2013 blg]
Fourth Annual Ryde 4 Tylor
Saturday, September 14th, 2013
Knickers Saloon
Dubuque, Iowa
| 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]
3rd Annual Baltimore Orioles - Dillon Papier's Birthday Benefit!
Oriole Park Stadium
Frederick, MD
Sunday, August 25th, 2013
Enjoy a ball game while celebrating Dillon Papier's 11th birthday with friends and family!
The event is being held at the Oriole Park Stadium and includes a pregame party, silent auction (donated by Oriole players), and an Orioles guest appearance. Also, don't miss Dillon throwing the first pitch!
[Aug 9th, 2013 blg]
Letter from Greg Crawford - Dean of Notre Dame College of Science
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 – [email protected] , [email protected] , and [email protected] – 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.
Greg will be leaving from Los Angeles, CA on June 27th with the special surprise of arriving in Baltimore, MD in time to attend the 2013 Family Support and Medical Conference!
To follow his travels and show your support you can visit Greg's Blog .
[Updated June 25th, 2013 blg]
Golf "Fore" Stacey
Saturday, August 3rd, 2013
Spring Creek Golf Center
Cold Spring, WI
Stacey Vorpahl (NPC) Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, August 3rd, 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 27th, 2013 blg]
Smith Family BReaK Thru Fund 6th Annual Gold Outing
Saturday, August 3rd, 2013
Lafayette Elks Country Club
West Lafayette, Indiana
The Smith Family
Keaton, Braden & Riley (NPC) with parents Trent & JulieThe 6th Annual Smith Family BReaK Thru Fund Golf Outing is scheduled for August 3, 2013! The Smith family is again planning to have an 8 hole scramble, Lunch, Dinner/Auction at the Lafayette Elks Country Club.
Funds raised will go to benefit Niemann-Pick Type C Research!
Visit the Smith Family BReaK Thru Fund Golf Outing page for more information on participation or how you can help!
[July 25th, 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]
Dunkin' Donuts ~ Baskin Robbins Grand Opening Fundraiser
Saturday, June 29th, 2013
Frederick, MD
Dillon Papier (NPC) Come show your support and spread awareness by joining the Papier family for the Grand Opening of a Dunkin' Donuts & Baskin Robbins in Frederick, Maryland!
The event, scheduled for Saturday, June 29th, will include face painting, balloon entertainment and a live DJ from 103.5! A percentage of all sales proceeds for the entire day will be donated to the National Niemann-Pick Disease Foundation for Type C research in honor of Dillon Papier!
For more information you can view the Event Flyer .
[June 27th, 2013 blg]
Erin Roberts' Memorial Road Race 5K
Saturday, June 15th, 2013
St. Mary of the Sacred Heart Church
Hanover, MA
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]
Zumba Fundraiser
Monday, June 10th, 2013 7:15pm
Perry Hill School
Shelton, CT
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 view the event flyer!
[June 7th, 2013 blg]
2013 5K Run/Walk for Ty Quandt
Saturday, June 1st, 9:00 AM
Bradley Lake Park
Puyallup, WA
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]
7th Annual Ducks for Bucks
Saturday, June 1st, 2013 12:00pm-5:00pm
Wines of the San Juan Winery
Blanco, NM
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]
4th Annual Hadley Hope ~ Vegas in the Valley Fundraiser
Saturday, June 1st, 2013
Rougue Valley Country Club
Medford, OR
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]
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]
Pink Zebra Fundraiser
In Honor of Alisha and Amber Casey
May 25th, 2013 7:00pm
Cassandra Huff Bumgarner is holding an online Pink Zebra party on Facebook to raise awareness and donations in Honor of Alisha and Amber Casey. All proceeds will go to the NNPDF for Type C.
Pink Zebra is a fragrance company that offers reed diffusers, simmering lights, simmer pots, candles, soaps, lotions, and sprinkles that are fragrances made from soft soy wax.
For more information on joining in the event you can visit the Facebook Event Page . If you cannot attend the event, but would like to place an online order, you can visit Cassandra's Consultant page on the Pink Zebra web site.
[April 9th, 2013 blg]
2nd Annual Trots 4 Tristan
May 25th, 2013 8:00 AM
Sabine High School Track
Kilgore, TX
Tristan Lindsey (NPC) Join the Lindsey family at the 2nd annual Trots 4 Tristan, a 5k & 1 mile run/walk fundraiser in honor or their daughter, Tristan.
To view the event flyer, click here .
[May 8th, 2013 blg]
Home Run Derby
Sunday, May 19th, 2013 10:00am-4:00pm
Bristol Township Nationals Little League Fields
Croydon, PA
The Andrew Coppola Foundation is holding their Home Run Derby fundraiser to raise awareness for NPC on Sunday, May 19th at the Bristol Township Nationals Little League fields in Croydon, PA.
For registration information, Click Here
[May 16th, 2013 blg]
Rocketman Florida Triathlon - Half Ironman Course
Sunday, May 5, 2013
Space View Park
Titusville, Florida
Anne O'Connor Smith (NPB)
Anne O'Connor Smith, an inspiration to all, is participating in the Rocketman 1/2 Ironman Triathlon and is requesting a $250 match for NPD from the Community Foundation of Brevard. Let's show our support!
She asks all donations be made through the NNPDF web site in her honor, under Type B so the funds go to Type B research and can be counted for potential matched funds.
Visit the Donation page to make a pledge. You can also visit the Facebook event page for more information as it becomes available.
[April 11th, 2013 blg]
Walk/Run for Kailey
Sunday, May 5, 2013 1:00pm
Clark Middle School Track
St. John, Indiana
Kailey Florkiewicz (NPC)
Help raise money for Niemann-Pick (Type C) Research in honor of 9 year old Schererville resident Kailey Florkiewicz. This is the first fundraiser in honor of Kailey, so let's show our support as they host a walk/run!
You can view the event flyer for more details!
You can also view the article resulting from the event by visiting the Newsline page .
[April 5th, 2013 blg, updated April 8th, 2013 blg]
2nd Annual Kure 4 Kamryn Fundraising Event
Saturday May 4th, 2013 11:00am - 5:00pm
Civitan Park
Guntersville, AL
Kamryn Brumbeloe (NPC)
Come join the Brumbeloe family for their 2nd annual Kure 4 Kamryn fundraiser! There will be food, music, a car show and more!
A portion of donations will go to the Ara Parseghian Research Foundation and the National Niemann-Pick Disease Foundation.
You can view the event flyer for more details!
[April 4th, 2013 blg]
8th Annual 5K Walk/Run for a Cure
Sunday, May 4, 2013 10:00am
Lehigh Parkway
Allentown, PA
Adam Recke (NPC) & Family
Come join the Recke family at the 8th Annual 5K Walk/Run in honor of their son, Adam. This fun event has live music by Scott Marshall, basket raffle, children’s entertainment, free food/beverages, and much more!
You can view the event flyer , or visit their Web site for more information.
[April 5th, 2013 blg]
Bingo Charity Event
Sponsored by the MOMS Club of Urbana
Thursday April 18th, 2013 7:30pm
Natelli Community Center
Urbana, MD
Dillon Papier (NPC)
The MOMS Club of Urbana is sponsoring a charity Bingo event in honor of Dillon Papier. Proceeds fund the National Niemann-Pick Disease Foundation, Type C research.
You can view the event flyer for more details or visit Dillon's web site .
[April 3rd, 2013 blg]
Running for Rare Diseases - In Memory of Wylder Laffoon
2013 Boston Marathon
April 15th, 2013
Boston, MA
Phil Mederia Wylder Laffoon (NPA) Running for Rare Diseases, an amateur running team comprised of Genzyme employees, is honoring our precious Wylder Laffoon (05/15/09 - 07/20/12, NPA) by one of their members running in his memory at this years Boston Marathon!
Runner Phil Mederia chose to represent NPD to help spread awareness, along with his team mates who are working with NORD to promote their project "Promote Early Diagnosis".
The 2013 Initiative will be to conduct a survey of rare disease patients, patient organizations and physicians,
- To collect data to gain insight on the frequency of misdiagnosis, and the time it takes to receive an accurate diagnosis of a rare disease.
- To help us gain the attention of the community at large and to make physicians aware that, for many people with rare diseases, getting an accurate diagnosis is still an elusive dream.
- To provide a platform for NORD to publicize the extent of the problem and to enlist physicians to help in addressing it
- To help gain the attention of legislators and corporations to help further drive investment into rare disease research
- To provide basis from which decisions can be derived on how the Genzyme/NORD Initiative can be focused in 2014 and beyond
- To link the greater rare disease community, providing clear visibility to the 6,000 rare diseases affecting more than 60 million people globally, so that no one stands in isolation
The federal government conducted a large study on this topic in the 1980s and published the 1989 report of the National Commission on Orphan Diseases. NORD replicated that study on a smaller scale in 2003. But there really has been no valid study of diagnosis since then, and it is very important for us to have current, reliable data to be able to publicize the need for more timely diagnosis.
We encourage our families and friends to visit their Facebook and "Like" the page to show we stand with Phil and his team for their efforts to spread awareness for rare diseases and honor the memory of Wylder. If you wish to support the team you can also visit their Silent Auction page .
[April 3rd, 2013 blg]
8th Annual Bowie Baysox Dillon Papier Benefit / Maris' 70th Birthday Wish
Sunday, April 14th, 2:00pm
Prince George Stadium
Bowie, MD
Please invite all your friends and family to join in this exciting celebration as the Papier family combine Dillon's grandmother, Maris', 70th birthday with Dillon's annual Bowie Baysox fundraiser. Proceeds fund the National Niemann-Pick Disease Foundation, Type C research.
You can view the event flyer for more details, or visit Dillon's web site.
[April 3rd, 2013 blg]
Garage Sale in Honor of Caden Bailey
April 6th, 2013 7:00am - 3:00pm
Palestine, TX
Caden Bailey (NPC) The Bailey family is holding a garage sale in honor of their son Caden. It was featured on the Palentine Herald Press web site.
For more details and to view the article, click here .
[April 3rd, 2013 blg]
Local Yankee Candle Fundraiser!
March 28th - April 10th, 2013
Naugatuck, CT
Bryanna (NPC) & Judy Desouza Judy Desouza is having a Yankee candle fundraiser in memory of her daughter, Bryanna.
Anyone interested should be within reasonable driving distance to Naugatuck, Connecticut since all product ordered will be delivered in one shipment to her home for dispersion.
Please contact Judy by e-mail if you are interested in ordering!
[Jan 11, 2013 blg]
Dear NPD Community,
In recognition of 2013 World Rare Disease Day, February 28th, the NNPDF would like to provide you with the latest updates to share with friends and family to help raise awareness into Niemann-Pick Diease. We will PERSEVERE in our Quest for a Cure!
To view Click Here
[Feb 28, 2013 blg]
Rare Disease Day
Thursday, February 28th, 2013
Rare Disease Day is an annual event, observed worldwide on the last day of February, to raise awareness of rare diseases as a public health issue. Groups around the globe are strategizing their advocacy and awareness efforts in support of World Rare Disease Day, to be observed Thursday, February 28, 2013.
Click Here to visit the Rare Disease Day page on the NNPDF site, or visit the Official Rare Disease Day website for more information.
There are over one hundred million people
living with a rare disease around the world.
Take down the borders, for rare disorders.
Show your solidarity today!
[Jan. 11, 2013 blg]
Purdue Coach Promotes Niemann-Pick Disease Awareness in Charity Challenge
Monday, January 14th - Wednesday, February 27th, 2013
Dear NPD Community,Bravelets did an article on Matt Painter's involvement in the Coaches' Charity Challenge to bring awareness to Niemann-Pick disease.
You can view the article Here.
Don't forget to vote everyday through February 27th to help Matt get to the final four stage of the challenge!
[Feb 21, 2013 blg]
Dan's Dreams ~ A Celebration of Life and Hope!
Fundraiser in Memory of Daniel Flinton
Sunday, December 9th, 2012 2:00pm - 7pm
Ballston Spa Elks Lodge #2619, 10 Hamilton Street
Ballston Spa, NY
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| Daniel Flinton (NPC) |
Daniel Flinton was diagnosed with Niemann-Pick Disease, Type C in June 2011 and lost his fight that November. Please join us as we remember Angel Dan's 6th birthday and raise funds for the NNPDF to PERSEVERE in finding treatments and a cure.
[November 7th, 2012 blg]
Believe in the Magic of Christmas Challenge!
~ Warrior Baby ~
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| Wylder James Laffoon (NPA) |
The Believe in the Magic of Christmas Challenge , held by the Laffoon family, ended on November 16th. The below picture is the result!
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| Office Elves: Cathy (left) and Beth (right) |
Thanks to the kindness and effort of all involved, 55 books were delivered by Santa's elves to the National Niemann-Pick Disease Foundation. From there, the office elves (pictured above) packaged and mailed them back out to children under 10 years of age living with NPD.
"Shannon Laffoon shares the results of the challenge on her blog!"
[Dec. 04, 2012 blg]
Cocktails & Creations - Over the Moon for You
Fundraiser in Memory of Breann Chavez
Saturday, October 27th
6:30pm - 9:30pm
Farmington, NM
| Pictured: Paintings created during the fundraiser! |
In celebration of the 20/20 Challenge and October Awareness Month, Lisa Chavez is gathering a group of friends for drinks and art! Cocktails and Creations is a fundraising event that hosts a painting workshop complete with wine, snacks and fun with friends.
Click Here for more information about the event.
[Oct 29, 2012 blg]
Zoe's Pumpkin Run!
Fundraiser in memory of Zoe Bachman
Friday, October 27th, 2012 6:00pm
Grover Pumpkin Festival on Main Street
Grover, NC
Come join us in memory of Zoe Bachman by participating in Zoe's Pumpkin Run! It's a 5K run benefiting the National Niemann-Pick Disease Foundation.
Click here for fundraiser information.
[Oct 22, 2012 blg]
Boot Scootin' Boogie Family Night!
Fundraiser in honor of Ty Quandt
Friday, October 26th, 2012 6:30pm-8:30pm
Mt. View Gym
Edgewood, WA
|
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Mt. View Elementary ASB is proud to announce its 6th Annual Family Dance in honor of former student, Ty Quandt. It's the "Boot Scootin' Boogie". All proceeds will benefit the National Niemann-Pick Disease Foundation.
[Oct 10, 2012 blg]
Space Coast Marathon & Half Marathon!
Fundraiser in Support of Niemann-Pick, Type B Patients.
Sunday, November 25th, 2012 ~ 6:15am - 9:15am
Cocoa, FL
|
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In honor of all Niemann-Pick, Type B patients, Anne OConnor-Smith will be participating in the
Space Coast Marathon & Half Marathon
. She is trying to get a match of $250.00 for NPD from the Community Foundation of Brevard. Any amount will help her towards her goal!
All donations should be made directly to the
NNPDF website
with a note that it is in Honor of Ann OConnor-Smith, Type B so all funds go to Type B research.
Click here to visit the Facebook event page.
[Nov 8th, 2012 blg]
Bowling Scotch Doubles Fundraiser
Saturday, October 20th, 2012
Michigan Center, MI
| Mindy Fagan (NPC) |
We are having a fundraiser event in honor of my daughter, Mindy Fagan. The school is doing a coin drive during the week of the 2nd through the 5th and just asking to donate for the 20/20 Awareness event.
[Oct 15, 2012 blg]
Hughes Family 20/20 Garage Sale !
Garage Sale
Friday, October 20th, 2012
Leslie's Home
Wichita Falls, TX
|
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| Riley Corbitt (NPC) |
Please join us for a garage sale in celebration of the 20/20 Challenge! I am asking people to donate a single garage sale item to help with my 20/20 goal.
All proceeds will go to the National Niemann-Pick Disease Foundation. I'm also going to have a table with NNPDF/NPD info, brochures, Legacy of Hope cards, and t-shirts. As part of the display, a donation jar for those who don't find anything to buy and of course pictures of my Riley.
[Oct 10, 2012 blg]
Persevere for a Cure!
Boutique, Raffle, and Bake Sale
Friday, October 20th, 2012 11am-4pm
Simi Valley EV Free Church
Simi Valley, CA
|
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| Mitch Brubaker (NPC) |
Please join the Brubaker family in celebrating October Awareness Month! They are hosting the Persevere for a Cure boutique, raffle and bake sale! They will have about 20 vendors each donating a portion of their sales to the National Niemann-Pick Disease Foundation.
[Oct 10, 2012 blg]
6th Annual Katlyn Sumbad Memorial Golf Tournament
Saturday, October 13th, 2012
Stevinson, California
|
Katlyn "Buggy" Sumbad (NPA)
4/8/06 - 11/24/08 |
The 6th Annual Niemann-Pick Disease Golf Tournament in Memory of Katlyn "Buggy" Sumbad will be held on Saturday, October 13, 2012. All proceeds will benefit the NNPDF. The event will be held at the renowned Stevinson Ranch Golf Club , Stevinson, California. The tournament is a 4-person scramble with a shotgun start at 8:00 a.m. There will be raffles, a silent auction, lunch, tee prizes, etc.
The entry fee is $120 per person, and includes greens fees, cart, lunch, range balls, and tee prizes. The entry deadline is September 22.
To participate, donate or sponsor a hole, please email Cindy Pruneau .
[July 11, 2012 mem]
Julia's Journey for Hope
Thirty-One Gift Home Party!
Friday, October 12th, 2012
Tonya's Home
Ocala, Florida
|
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| Julia Kain (NPC) |
Please come and join us for a fun filled night of girl time, shopping and snacks. I am hosting a Thirty-One Gifts party featuring their new Fall catalog. Come prepared to do a little Christmas shopping and maybe get something for yourself too! In honor of Niemann-Pick Disease Awareness Month. My consultant is donating 50% of her proceeds from this party to the NNPDF in honor of my daughter, Julia. She will also be holding a silent auction for a FREE All-in-One organizer! (must be present to win!)
See a Flyer of the event here. Please check out Julia's Journey Web Site here.
[Oct 10, 2012 blg]
October Awareness Month is Here!
The National Niemann-Pick Disease Foundation is sponsoring a national fundraiser and awareness compaign during October National Nieman-Pick Disease Foundation Awareness Month.
Click here to find out how you can help!
[Oct 12, 2012 blg]
20/20 Fundraiser in Memory of Stacey Vorpahl
| Stacey Vorpahl - (NPC) |
As the NNPDF took time to recognize the foundations work over the past twenty years, it was apparent that we needed to recognize a committed board members 20 year journey with the NNPDF as well. Barb Vorpahl began her service with the NNPDF in 1992 as a founding board member. She worked with other NPD families to establish the National Niemann-Pick Disease Foundation shortly after her daughter, Stacey, was diagnosed with NPD Type C. The board and families of the foundation took time to acknowledge Barb's devotion and unending work on behalf of the NNPDF at the 20th Annual NNPDF family support and medical conference held in Nashville, TN this past August.
As the families of the foundation took time to raise awareness during October NPD Awareness month, Barb contacted her family, friends and community members to thank them for their support to Stacey, her family and to the work of the NNPDF.
Please follow this link to read more about Barb's work over the years.
[Nov 6th, 2012 blg]
Geneva, New York Mayor Proclaims October NNPD Awareness Month!
| Ashley Sims - 22 (NPC) |
Thanks to the efforts of Juanita Aikens, on behalf of her daughter Ashley, the Geneva Mayor has signed a proclamation declaring October National Niemann-Pick Disease Awareness Month!
Click here to view the PDF of the proclamation.
Ashley is currently attending community college and enjoying the challenges of her classwork.
[Oct 25, 2012 blg]
Damon's Story
| Damon Eli Cardinal (NPA) |
Elsa Cardinal has created a video in memory of her son Damon for October Awareness Month. Click the link below to view the video and show your support!
Click here for "Damon's Story".
[Oct 25, 2012 blg]
Creative Memories Calender Fundraiser!
Creative Memories consultant, Nikki Lively, is working with her good friend Elsa Cardinal for a calender fundraiser that will benefit the NNPDF. The calender will include 30 individual stories and pictures with representation from all 3 types of Niemann-Pick Disease.
Click here to request an order form!
Only a set amount of calenders will be ordered, so order as soon as possible to ensure you get one!
[Oct 25, 2012 blg]
Scentsy October Awareness Fundraiser
|
Buddies donated to NNPDF from Scentsy fundraiser
purchases! |
Elsa Cardinal and Shannon Farnsworth Borst are having Scentsy fundraisers.
Elsa Cardinal will be donating her entire commission to the National Niemann-Pick Disease Foundation research fund. She will be handing out brochures to bring awareness for Type A & B in memory of her son Damon who passed away from Type A.
Click here for Elsa's Consultant Page
Shannon Farnsworth Borst will also be donating her commission to NNPDF research as well as hoping people would purchase Scentsy Buddies to send to the foundation for children affected by NPD Type A/B and C.
Click here for Shannon's Consultant Page
[Oct 15, 2012 blg]
I'm Moving Along Blog
|
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| Daniel Flinton (NPC) |
Every day during the month of October Jill Flinton will be blogging about NPD for October Awareness Month as well as to educate during the 20/20 Challenge! Visit her to show your support!
[Oct 10, 2012 blg]
Dillon Papier Charity Golf Tournament
Friday, September 21, 2012
Middletown, Maryland
This year's annual Dillon Papier Charity Golf Tournament is scheduled for Friday, September 21, 2012. Registration will begin at 9:00 a.m., with a shotgun start at 10:30. 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 Hollow Creek Golf Club, 50 Glenbrook Drive, Middletown, MD, 21769; Tele: 301-371-0400.
Visit
www.hollowcreekgolfclub.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 see the brochure or contact Mike Hayden for details, or visit www.dillonsfight.org .
This event benefits the National Niemann-Pick Disease Foundation. Details and registration forms are available here .
[Oct 10, 2012 blg]
WANTED: BIKERS!
Ride for Awareness
Thunderin' Cycles
Watertown, New York
Saturday, September 8, 2012
10:00 a.m.
| Collin and Cohen Parody |
A "Ride for Awareness" will be held to benefit research into Niemann-Pick Disease due to Acid Sphingomyelinase Deficiency (ASMD, i.e. Types A and B) on September 8, 2012. The ride will begin at Thunderin' Cycles, Watertown, New York, with registration opening at 10:00 a.m. The ride will culminate at Willie's.
All proceeds will benefit the NNPDF's program of ASMD research in honor of Collin and Cohen Parody, grandsons of NNPDF board member, Kathy Lane.
In addition to the ride, the event will include raffles, 50/50 drawings, live entertainment, a can drive, BBQ, and much more!
For more information, see the event flyer/poster .
[Mar 27, 2012 mem]
Dragon's Quest for Casen and Ty 5K Fun Run/Walk
Bradley Lake Park
Puyallup, Washington
Sunday, August 26, 2012
| Ty Quandt (NPC) |
A fun run and walk event will be held on Sunday, August 26, at Bradley Lake Park, Puyallup, Washington. The Dragon's Quest for Casen and Ty 5K Fun Run/Walk will raise funds for research into Niemann-Pick Disease Type C (NPC), which affects Ty Quandt, and funds for medical care for baby Casen, the infant son of one of Ty's teachers, born four months ago with a rare disease. Ty Quandt is the 15-year-old son of NNPDF Board Chair Karen Quandt and her husband, Gene.
The event will feature silent auction items including tickets to the Seattle Aquarium and the very cool dragon quilt pictured below, with 100% of the proceeds from both to benefit the NNPDF's program of research. There will also be a raffle. Donations are gratefully accepted.
Pre-register by August 5th to receive a t-shirt. On-site registration begins at 7:30 a.m. on August 26, with the run starting at 9:00 a.m. and the walk at 9:30 a.m.
Packet pickup and raffle tickets will be available on Saturday, August 25th, at Bradley Lake Park, from 3:00 - 7:00 p.m.
Bradley Lake Park is located at 531 31st Ave SE, Puyallup.
More information, links and registration form Or register online at active.com
[June 18, 2012 mem
2012 Ride for Adam
Saturday, August 25, 2012
Schnecksville, Pennsylvania
The 2012 Ride for Adam and Family Picnic will be held on Saturday, August 25, at 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 Race for Adam Foundation in honor of 13-year-old 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 children's entertainment area will operate from 2:00 p.m. until approximately 7:00 p.m. Basket raffles, 50/50 raffles, hamburgers, hot dogs, beverages and more will be available. Enter to win a custom-painted 2012 Harley Davidson Switchback -- tickets will be available on site for $10.
Tickets for the event are $25.00, with children 15 and under attending free. Flyer/poster
[June 19, 2012 mem]
Erin's Road Race
Hanover, Massachusetts
Saturday, August 25, 2012
9:00 a.m.
|
Erin Roberts (NPC)
4/5/1980 - 12/1/04 |
The family of Erin Arline Roberts is planning the Erin Roberts Memorial Road Race and Fun Run for Saturday, August 25, beginning at 9:00 a.m. The event will be held in Hanover, MA, to benefit the NNPDF's NPC research program.
Check out the event's Facebook page for more details: Erin Roberts Memorial Road Race
[Feb 2, 2012 mem]
Third Annual Ryde 4 Tylor
Saturday, August 11
Knickers Saloon
Dubuque, Iowa
| Tylor White-Richardson (NPC), age 15, with his mom, Jenn White, and Brian Simon |
The Third Annual Ryde 4 Tylor will be held on Saturday, August 11, beginning and ending at Knickers Saloon, 2186 Central Ave., Dubuque, IA. 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.
Registration will be from 10:30 a.m. to noon, with kickstands up at 12 noon sharp. The route will include stops in North Buena Vista, Guttenberg, Petersberg and Farley, and then back to Knickers for dinner ($3.00) from 6:00 - 7:30 p.m. The event will include koozies and wristbands for sale, as well as 50/50 drawings.
[July 25, 2012 mem]
2012 Frederick Keys Benefit and Dillon's 10th Birthday Party!
Saturday, August 11, 2012
6:00 p.m.
Frederick, Maryland
|
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Dillon with Matt Tucker, infielder for the
Frederick Keys Baseball Team |
Help us celebrate Dillon's 10th birthday by enjoying a ballgame with friends and family on Saturday, August 11th, at 6:00 p.m. at the Frederick Keys Harry Grove Stadium. Come early to cheer Dillon on as he throws out the first pitch, and following the game, enjoy the spectacular fireworks.
Tickets: Reserved Seating $10 (50% tax deductible) or Field Seating $12 (50% tax deductible).
Donations will be gratefully accepted, and will help us drive NPC research forward. Please be as generous as you can. Time is Dillon's enemy, and we are working for a cure to save Dillon and other children affected by Niemann-Pick Type C.
For tickets: email Darrile or Mark Papier or Darlene Gelsleichter . For more details, please see the flyer/poster .
Thank you for providing "The Gift of Hope!" Hope to see you at the game on August 11th!
[July 25, 2012 mem]
Johnathan's Dreams - Cure NPC
Wine Tasting and Silent Auction Event
July 14, 2012
|
The second annual Johnathan's Dreams - Cure NPC wine tasting and silent auction event is being planned for July 14, 2012. The gala will raise awareness of Niemann-Pick Disease and funds for the NNPDF in honor of Johnathan Spencer-Merrill (NPC). Five-year-old Johnathan is the son of Rebecca and Keith Spencer of Gilroy, California.
Photos above are from the 2011 event. More details on the 2012 event will be posted as they become available. http://www.johnathanspencer.org/index.html
[Jan 16, 2012 mem]
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Fun Pasta Fundraiser Sale
July 12 - 26, 2012 (Online Orders Accepted Until August 26)
Available Nationwide
|
Bryanna DeSouza at 8 years of age,
with her Mom, Judy, at her cousin Heather's graduation in 2000 |
From July 12th through the 26th, Judy DeSouza will conduct a Fun Pasta Fundraiser sale in memory of her daughter, Bryanna DeSouza, and in honor of all affected by Niemann-Pick Disease. Bryanna passed away from the effects of Niemann-Pick Disease Type C (NPC) in 2006 at the age of 14 years. ( Online orders may be placed up until August 26.)
Fun Pasta Fundraising offers unique pastas in many shapes, including animals, sports team logos, holiday themes, etc. Bags of pasta start at only $6.50, and 40% of the proceeds will benefit the NNPDF. Purchases may be made directly from Judy or online for delivery to other locations around the U.S.
Visit Judy's special page at Fun Pasta to place an order in support of the NNPDF!
[May 8, 2012 mem]
5th Annual Riley's Run
Saturday, July 21, 2012
Woodville, Alabama
|
Riley Corbitt (NPC)
7/27/02 - 10/29/08 |
The 5th Annual Riley's Run will be held on Saturday, July 21, to raise awareness into Niemann-Pick Disease and funding for research to beat it. 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, along with t-shirt and bandanna sales. All proceeds benefit the NNPDF.
Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction
Saturday, June 30, 2012
Spring Creek Golf Center
Cold Spring, Wisconsin
| The Vorpahl Family |
Stacey Vorpahl (NPC)
1/3/85 - 10/9/04 |
Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, June 30, in memory of their daughter, Stacey (NPC), who passed away in 2004. This event will benefit the National Niemann-Pick Disease Foundation to support research into treatments and a cure for Niemann-Pick Disease.
Visit the Golf "FORE" Stacey page for registration information and a list of auction items ~ or ~ follow this quick link for a list of the auction items available (updated June 27th).
[Apr 3, 2012 mem]
Frederick Dream Dinners Service
Proceeds to Benefit NNPDF Through June
| Dillon Papier (NPC) and his parents, Mark and Darrile |
Tracey Muragaki and Jamie Carr of Frederick (Maryland) Dream Dinners are calling on other area families to join with them in making dinner together to support the National Niemann-Pick Disease Foundation's Quest for a Cure while helping ease their own busy schedules. Participants can make a month's worth of dinners in just an hour, taking stress out of the dinner hour while saving time and money and supporting a worthy cause.
One hundred percent of Frederick Dream Dinner's proceeds from new guests who register for and attend a meal assembly session by June 29th will be donated to the NNPDF in honor of Dillon Papier, who is affected by Niemann-Pick Disease Type C (NPC).
For more information, visit www.dreamdinners.com or call 301-874-1515. Please mention "Dillon" when attending a session or enter "NPC" online in the special instruction box at check out. Flyer/press release
[Jun 12, 2012 mem]
Pebble Beach (California) Golf Weekend
June 22-24, 2012
The University of Notre Dame is hosting the Parseghian Classic Golf Weekend June 22 - 24, to benefit the fight against Niemann-Pick Disease Type C through the Ara Parseghian Medical Research Foundation.
The weekend includes a three-night stay at The Lodge at Pebble Beach, dinner and reception June 22nd, golf at The Links at Spanish Bay on June 23rd, golf at Pebble Beach Golf Links on June 24th, and the final reception and dinner on June 24th.
For more details or to register, visit: http://niemannpick.nd.edu/parseghianclassic/
Pebble Beach Golf Links: http://www.pebblebeach.com/golf/pebble-beach-golf-links
The Links at Spanish Bay: http://www.pebblebeach.com/golf/the-links-at-spanish-bay
[Mar 23, 2012 mem]
10th Annual Alex and Laura Vaughan Memorial Golf Tournament
Stone Tree Golf Course
Owen Sound, Ontario Canada
Saturday, June 16, 2012
|
Alex Vaughan (NPC)
|
Laura Vaughan (NPC)
1/16/95 - 11/8/01 |
Update: $32,000 - an all-time record high -- was raised for research at the 2012 Alex and Laura Vaughan Memorial Golf Tournament!
A note of appreciation from the Vaughan family:
The 10th Annual Alex and Laura Vaughan Memorial Golf Tournament was a resounding success -- we are ecstatic!!!!! Once again our fantastic family, awesome friends, and the amazing businesses throughout Canada and the U.S. have come through for us, and we are going to be able to contribute $32,000 towards research into a treatment and cure for Niemann-Pick Disease -- WOW!!!
We had a fantastic day on Saturday -- our little angels made sure that the sun shone and the temperature was hot. Everyone had a fantastic time -- what a day!As many of you know we have decided to make this our last tournament -- 10 years is a good run and it's time to try something different.
So we aren't going away -- we haven't given up our fight -- it will just take on a different life.
All of you are truly fantastic.....Because of each and every one of you we will put time back on the side of all of the children suffering from this life-stealing disease.
Thank you, thank you, thank you!!!
Allan, Michael and Tammy
The 10th Annual Alex and Laura Vaughan Memorial Golf Tournament is being planned for Saturday, June 16, in memory of the children of Allan and Tammy Vaughan of Durham, Ontario. Tammy is the Chair of the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF), and is also a member of the NNPDF Board of Directors.
A message from the Vaughan family:
This year will mark 20 years since we lost our courageous “wee man”, Alex, and 11 years since we lost our little princess Laura ~ again ~ where does the time go? There isn’t a day that goes by that we don’t think about our angels. Alex at 24 and Laura at 17 – what we wouldn’t give to be able to have the opportunity to watch these precious angels grow up from children to adults. But we have to be thankful for the time that we were given with these wonderful babies and we cherish the memories that we will hold in our hearts forever.
Their short lives have contributed to the world in ways that we will never know – and each and every one of you is to thank for your contributions to the fight against Niemann-Pick Disease in their names. As we close in of the 10th Annual Alex and Laura Vaughan Memorial Golf Tournament, we reflect back on all that each and every one of you have allowed us to accomplish, and realize that 10 years is an awesome feat to be able to celebrate.
At this time, the 10th Annual Golf Tournament will be our last for a while ~ it won’t be “good bye” but simply a so long for now. We won’t be going away but will continue to keep our fight going in other ways. As you have heard us say many times before, our mission in life is to do our part to eradicate this life stealing disease. As of yet, Niemann-Pick Disease has not been eradicated but we vow to fight until we do have a solid treatment and cure for all those diagnosed with NPD.
So it seems this will be our last year to ask for your support for the golf tournament - can we count on you to help us make the 10th Annual Alex and Laura Vaughan Memorial Golf Tournament the best yet? A monetary donation, a donation of a prize for the silent auction table, a donation of a prize for the raffle, your presence as a golfer – one or all of these would be so greatly appreciated.
This year we will again be hosting the tournament at the Stone Tree Golf Course in Owen Sound on the 16th of June. It will be another day of fun, laughter and camaraderie.
Our successes to date would not have been possible without the support of you, our friends and family. We thank you from the bottom of our hearts for your support in the past and ask for it once again this year as we strive to make the 10th Annual Alex and Laura Vaughan Memorial Golf Tournament the most successful yet.
See you on the 16th of June friends!
Allan, Michael and Tammy
Golf registration and hole sponsorship forms
[Apr 3, 2012 mem]
The Summer Love Show featuring Jenavive & DJ dRan with Bellewether
|
The friends of Mariarosa Martino (NPB) are hosting The Summer Love Show to benefit the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF). The event will be held at Hillhurst Community Hall beginning at 8:00 p.m., and will feature Jenavive and DJ dRan with Bellewether.
For tickets and more information visit www.jenavive.com or email Jenavive.
[May 24, 2012 mem]
Birthday Gifts Benefit NPC Research
|
Congratulations, John, on your birthday, and thank you to all your family and friends for helping the foundation advance the
Quest for a Cure!
[June 12, 2012 mem]
7th Annual Bowie Baysox Dillon Papier Benefit
Bowie, Maryland
Sunday, June 3, 2012
2:05 p.m.
|
Enjoy a ballgame with friends and family on Sunday, June 3rd, at 2:05 p.m., at the Bowie Baysox Stadium, and join the fight against Niemann-Pick Disease Type C (NPC). Come early to cheer Dillon on as he throws out the ceremonial first pitch to Orioles Second Baseman Brian Roberts! By sharing in Dillon's love of baseball, you are making a difference. Your support will help fund critical research to find a cure for this devastating, extremely rare disease that is always fatal. Without a treatment, Dillon will lose his ability to walk, talk, eat (eventually requiring a feeding tube), and recognize his parents. For tickets, contact Maris Walker by email or by phone at 301-464-8935 or 301-529-6481; or by mail at 3900 Winchester Lane, Bowie, MD, 20715.
Donations may be mailed to: NNPDF, Attn: Dillon Papier, 9741 Royal Crest Circle, Frederick, MD, 21704. Please be as generous as you can -- time is Dillon's enemy! For more details, see the event poster/flyer -- please print it out and help us publicize this fun and worthwhile event! See the article posted to OSC! |
Dillon's family, friends, teachers, doctors and the other children and families
affected by NPC THANK YOU for providing the "Gift of Hope!"
[Apr 23, 2012 mem]
Ducks for Bucks
Annual Family Fun Day
Turley, New Mexico
Saturday, June 2, 2012
12 Noon - 5:00 p.m.
Every year on the first Saturday in June, Ducks for Bucks holds its Annual Family Fun Niemann-Pick Disease Awareness Day at
Wines of the San Juan in Turley, NM (30 miles east of Farmington), in memory of Breann Chavez. Breann, the daughter of Jami and Lisa Chavez, passed away from NPC in 2006, at the age of three years, and she loved her ducks!
This is a day filled with fun activities for the kids, including horse rides, carnival games, clowns, face painting, "jumpies" and more. There are also activities for the adults, with raffles, a silent art auction, live music, food and wine tasting, all under the shade of the winery's large cottonwood trees. Anyone can enter the
Duck (or Duct) Tape Art Contest
, and there is a $100 prize for first place!
Another fun event that takes place on this day is The Dainty Duck Dash. Enter a rubber duck to race for the first place prize of $1000! (Need not be present to win.) Visit the Ducks for Bucks Web site for many more details and to buy your racing ducks:
http://www.ducksforbucks.org/Annual_Family_Fun_Day.php
Ducks for Bucks is a generous supporter of the NNPDF. Thank you, Jami and Lisa!
[May 25, 2012 mem]
Dana's Angels Research Trust Annual Gala Benefit and Concert
Stamford, Connecticut
Saturday, May 5, 2012
The Dana's Angels Research Trust Annual Gala Benefit and Concert will be held on Saturday, May 5, at the Palace Theatre in Stamford, Connecticut. This year's concert will feature nine-time Grammy award winner Natalie Cole, with event co-hosts Kathie Lee and Frank Gifford. The gala will begin at 6:00 p.m., and the concert at 8:00.
For more information, visit the Dana's Angels Facebook page, or http://www.DanasAngels.org . Tickets for the gala are $350.
Concert tickets are $65 to $150, and can be ordered at http://www.SCALive.org or by telephone at 203-325-4466.
Proceeds will benefit Dana's Angels Research Trust (DART).
[Mar 23, 2012 mem]
Spring Festival to Benefit NNPDF in Honor of Dillon Papier
Rockville, Maryland
Sunday, April 29, 2012
9:30 a.m. - 1:00 p.m.
| Dillon Papier (NPC) |
The B'Nai Israel Sisterhood of Rockville, MD, is hosting a Spring Festival for the entire family, with proceeds to benefit the National Niemann-Pick Disease Foundation in honor of Dillon Papier. Dillon, the nine-year-old son of Darrile and Mark Papier of Frederick, MD, is fighting Niemann-Pick Disease Type C (NPC).
The festival will feature a carnival with fun activities for children, shopping, food and beverages, and the public is invited to attend. Homebaked goods, popcorn, fruit snacks, chips, juice boxes, water, soda, etc. will be available. Wristbands for unlimited moonbounce and carnival games are $10 until April 24, and $15 after that date.
B'nai Israel is located at 6301 Montrose Road, Rockville.
For additional information or to become a vendor, contact Christina or Sheila -- see the flyer/poster for more details.
[Apr 12, 2012 mem]
Cornhole for a Cause
Specific Gravity Pizzeria & Bottle Shop
Salisbury, Maryland
Sunday, April 29, 2012
12:00 Noon
| Dillon Papier (NPC) |
Cornhole teams are invited to enter a Cornhole for a Cause competition to raise funds for the fight against Niemann-Pick Disease. Specific Gravity Pizzeria & Bottle Shop in Salisbury, MD, is hosting the event in honor of nine-year-old Dillon Papier, who is affected by Niemann-Pick Disease Type C.
Registration for each team of two players is $20 and the event will begin at noon on Sunday, April 29. To register, email Matt or see the flyer and registration form for more details.
[Apr 12, 2012 mem]
Pediatric Blood Draws Support NPC Research
Two recent pediatric blood draw events coordinated by NNPDF families are supporting important research into a blood test to diagnose Niemann-Pick Disease Type C (NPC).
Karen Quandt, mother of 15-year-old Ty Quandt (NPC), organized a blood draw in Puyallup, Washington, to collect samples from healthy (non-NPD) teens to serve as pediatric control samples (top two photos). Rebecca Merrill Spencer, mother of 6-year-old Johnathan Spencer (NPC), organized a blood draw in Gilroy, California, in which samples from younger non-NPD children were drawn (bottom two photos).
Between the two events, a total of 82 healthy children and youth, ages 3 to18,
heroically rolled up their sleeves to provide blood samples for research!
The diagnostic blood test in development is expected to provide a faster, easier and more comfortable method than the current skin punch biopsy diagnostic test, and will allow newborn screening for NPC. The research on the new blood test is being done at the National Institutes of Health (NIH) in Bethesda, Maryland, and at Washington University School of Medicine in St. Louis, Missouri.
Dr. Daniel Ory of the Washington University School of Medicine offered his thanks and appreciation, stating, “On behalf of the research team working towards the goal of developing a newborn screen for NPC, I offer my heartfelt thanks for your outstanding efforts with the blood sample drives. These samples are very important because they will help us establish reference ranges for the screen, and will speed up our work.”
Read this Gilroy Patch article by Ann Krueger Spivack about the Gilroy event, and the many volunteers, donors and little heroes who made the blood draw such a big success:
http://gilroy.patch.com/articles/amazing-turnout-for-juvenile-blood-drive-to-fight-npc#photo-9695762
Thank you to Karen, Rebecca, the volunteers, and especially the brave young donors, for participating in this important research project!
[Apr 23, 2012 mem]
Trots for Tristan
|
A 5K and 1 mile fun run/walk will be held on Saturday, April 14, to raise funds for the NNPDF in honor of Tristan Lindsey (NPC). An event for the entire family, Trots 4 Tristan will be held at the Sabine High School track, and will feature concessions, raffles and silent auction.
There will be age divisions for the run/walk, with awards. Registration begins at 8:00 a.m., the 5K starts at 9 a.m., and the 1 mile starts at 10:00 a.m. Participants may register the day of the event, or in advance. The deadline for preregistration is Friday, March 30.
Organizers have set a goal of raising $10,000 in honor of Tristan's upcoming 10th birthday. Tristan is the daughter of Tracy and Derrick Lindsey of Kilgore, Texas.
For more information and the registration form, login to Facebook and search for Trots 4 Tristan, or visit https://sites.google.com/site/trots4tristan/ .
{Mar 26, 2012 mem]
Bowling for Dillon!
Brunswick Zone
Columbia, Maryland
Sunday, April 1, 2012
| Bowling for Dillon! party participants |
A Bowling for Dillon party will be held on Sunday, April 1, from 3:00 - 5:00 p.m., at Brunswick Zone, 7100 Carved Stone, in Columbia, MD. Hosted by his cousin, Mira, this event will benefit the NNPDF in honor of nine-year-old Dillon Papier, who is affected by Niemann-Pick Disease Type C.
Admission is $15 and includes two hours of unlimited bowling and shoe rental. Hot dogs, baked goods, snacks, and raffle tickets will be available as well.
For ticket details, please see the flyer/poster or visit www.dillonsfight.org .
[Mar 5, 2012 mem]
Shrine Club Fundraiser
Saturday, March 31, 2012
9:00 a.m.
Ocala, Florida
The Ocala Shrine Club, 4301 Maricamp Road, is holding a fundraiser on Saturday, March 31, to benefit the family of 12-year-old Julia Kain (NPC) and the NNPDF. The day will include a poker run, spaghetti meal, live music, raffles and more.
All motorcycles and other vehicles are welcome. First place prize is $300, second place is $200, and third place is $100. Registration begins at 9:00 a.m., with the first bike/car out at 9:30, and last bike/car out at 10:30; last bike/car in by 3:00 p.m. The cost is $15 per driver, $10 per rider, $5 for each additional poker hand. There will be coffee and breakfast available while the supply lasts.
Tickets for the spaghetti dinner are $5 in advance, and $7 the day of the event. There will be a 50/50 drawing, prize drawings, a photo station, bounce house, and live entertainment, making the event fun for the whole family.
For more information visit www.juliasjourney.net .
Article by Andy Fillmore posted on ocala.com .
[Mar 28, 2012 mem]
Kure 4 Kamryn
Charity Ride and Event
Saturday, March 24, 2012
Guntersville and Rainbow City, Alabama
A special Kure 4 Kamryn Charity Ride and Event is being planned for Saturday, March 24. The Charity Ride will begin at 10:00 a.m. at the 12th Street Baptist Church in Rainbow City. A donation of $20 is requested but not required. Other activities (details to be announced) will be held at Civitan Park, Guntersville.
These awareness and fundraising events are being planned in honor of Kamryn Brumbeloe (NPC). For more information, visit the Brumbeloe family's blog: http://www.brumbeloes.blogspot.com/
[Feb 20, 2012 mem]
Yankee Candle Sale to Benefit NNPDF
In Memory of Bryanna DeSouza
Naugatuck, Connecticut
March 19 - March 30, 2012
|
Bryanna DeSouza (NPC) (1992 - 2006)
on her first day of kindergarten |
Judy DeSouza will hold a Yankee Candle sale, with proceeds to benefit the NNPDF in memory of her daughter, Bryanna DeSouza. The sale will go from March 19 through March 30, with orders local to Naugatuck, Connecticut, only. Please email Judy for more information or to place an order.
[Dec 5, 2011 mem]
Fishing For Charities is a bass fishing tournament trail that is devoted to raising money for selected charities. The NNPDF will be the beneficiary of funds raised by the tournament on Saturday, March 24, 2012, at Shearon Harris, North Carolina. The tournament is dedicated in honor of 15-year-old Raiden Linkous (NPC).
For more details, please visit
www.fishingforcharities.com
.
Flyer/poster
for the March 24 event.
The Online Outdoorsmen magazine, Online Fishermen (scroll to pages 46-47) , ran this story (PDF) about Fishing for Charities and Dwayne Linkous' work to raise funds through this Tournament Trail.
Check out this YouTube video , produced by his Middle School, in celebration of Raiden's 8th grade graduation.
[Dec 28, 2011 mem]
Java and Jewelry Event to Raise Funds for Niemann-Pick Disease
in Memory of Steven M. Roehl, Jr.
New Lenox, Illinois
March 10, 2012
A Java and Jewelry event scheduled for Saturday, March 10, will raise funds for Niemann-Pick Disease in memory of Steven M. Roehl, Jr. Java and Jewelry will feature a jewelry show, coffee and a raffle for a free necklace. Steven Roehl, Jr., the son of Donna Roehl, died in 1982 at the age of two years from Niemann-Pick Disease Type A.
Steven's sister, Cathryn Smith, will host Java and Jewelry at 919 Chelsea Court, New Lenox, from 10:00 a.m. until 1:00 p.m., on March 10. The public is invited to come and enjoy a cup of coffee while browsing the jewelry displays.
Proceeds from the event will benefit the National Niemann-Pick Disease Foundation and NPD Type A research.
[Feb 24, 2012 mem]
Pick Zoe Concert to Benefit NNPDF in Memory of Zoe Bachman
Saturday, March 3, 2012
6:30 - 9:00 p.m.
Kings Mountain (North Carolina) High School Auditorium
|
Zoe Bachman
12/19/03 - 6/9/06 |
Pick Zoe, a special concert event, will raise awareness and funds for Niemann-Pick Disease in memory of little Zoe Bachman. Zoe, the daughter of April and Russell Van Dyke and Ken and Misty Bachman, passed away at the age of 2-and-a-half years from the effects of Niemann-Pick Disease Type A/B.
Pick Zoe will be held at the B.N. Barnes Auditorium, Kings Mountain High School, 500 Phifer Road, Kings Mountain, NC, on Saturday, March 3, beginning at 6:30 p.m. Tickets are $5 in advance, $7 at the door, and are available by calling 828-320-2857 or email [email protected] .
The concert will feature StorySide: B and other local artists, with special guest speaker Jody Griffin.
Proceeds will benefit the National Niemann-Pick Disease Foundation's Quest for a Cure.
Printable flyer/poster for Pick Zoe (pdf) www.caringbridge.org/visit/zoebachman
Article by Jackie Bridges from The Star Online
[Feb 8, 2012 mem]
Predator Contest to Benefit NNPDF
Chilhowie, Virginia
February 24 - 25, 2012
Lewis & Clark Outdoors of Chilhowie, Virginia, will sponsor a Predator Contest with proceeds to benefit the NNPDF. The contest will be held on Friday and Saturday, February 24 and 25, and is in honor of sisters Alisha and Amber Casey (NPC), daughters of Diana and James Casey of Saltville, VA.
The Predator Contest will assign points for bobcats, coyotes and foxes. The entry fee is $25.00 per hunter, and first prize will be a $25.00 gift certificate to Cracker Barrel Old Country Store and Restaurant.
Questions should be directed to Matthew Lewis at Lewis & Clark Outdoors, 1227 E. Lee Hwy., Chilhowie.
Press release with more details .
[Feb 15, 2012; mem]
Deacon's 25th Anniversary
Dedicated to the Memory of Emily Hrbacek
| Emily Hrbacek and her grandpa, Tom Eultgen |
Thomas Eultgen, Eureka, Missouri, recently celebrated his 25th anniversary of serving as a deacon in the Catholic Church. Mr. Eultgen dedicated gifts he received in honor of this milestone to the NNPDF in memory of his granddaughter, Emily Hrbacek. Emily passed away from the effects of Niemann-Pick Disease Type C (NPC) in July of 2010, just short of her 11th birthday.
Emily was the daughter of Laura and Scott Hrbacek, also of Eureka.
[Feb 22, 2012 mem]
Project Caden
Saturday, January 14, 2012
Palestine, Texas
|
Caden Andrew Bailey (NPC)
|
Six-year-old Caden Bailey, the son of James and Ashley Bailey, was recently diagnosed with Niemann-Pick Disease Type C. The Bailey family's friends and supporters are organizing a fundraiser to help the family in their fight against NPC.
The public is cordially invited to attend an event on Saturday, January 14, at the VFW Post 3907; 3800 West Oak; Palestine, Texas. Attendees will enjoy "some of the best tastin' bar-b-que in Texas!" along with delicious baked goods and music. A silent auction and raffles will also be held in conjunction with the event.
Donations for the silent auction and raffles are being accepted, with all proceeds to benefit Caden Bailey.
For more details, please see the event flyer .
[Dec 12, 2011 mem]
Rucker Elementary School Fundraiser
Gilroy, California
January 2012
|
Rebecca Spencer accepts the donation
from Rucker Elementary School |
Rucker Elementary School in Gilroy, California, will be holding a fundraiser for the NNPDF's Quest for a Cure. Small fundraising boxes with the NNPDF logo and information will be sent home, with an instructional flyer, with each student. Students are asked to collect spare change to fill the little boxes and return them to school, where the money will be tallied and submitted.
Update: Rucker School collected $1800 to help advance the fight against NPC! (see photo above)
[Jan 16, 2012 mem]
Foster's Grille
8925 Fingerboard Road
Urbana, Maryland
Monthly Benefit Event
The first Monday of each month, Foster's Grille donates 30% of all proceeds to benefit the NNPDF in honor of Dillon Papier (NPC). Good food and good friends ensure the success of this ongoing, incredibly generous fundraiser! Orders may be phoned in to 240-699-0194. Thank you, Foster's Grille!
[Dec 14, 2011 mem]
Mohegan School
Shelton, Connecticut
| Naomi Tyrrell (NPC) surrounded by family and friends at the 2011 NNPDF Family Support and Medical Conference in Norfolk, VA |
The students and staff of Mohegan School in Shelton, Connecticut, recently participated in a fundraiser in support of classmate Naomi Tyrrell. Nine-year-old Naomi has Niemann-Pick Disease Type C (NPC). Mohegan Principal Anne Hamilton writes that "Naomi has been a student at Mohegan School for 5 years and is loved by all."
[Dec 9, 2011 mem]
"Pillows for Pat"
In Honor of Patrick Gaffney
| Colleen Gaffney makes and sells "Pillows for Pat" to raise awareness of Niemann-Pick Disease and funds for the NNPDF's Quest for a Cure in honor of her brother, Patrick (NPC). Patrick and Colleen are the children of Steve and Marge Gaffney of Naperville, Illinois. | ||
[Nov 28, 2011 mem]
|
Thank You to these families and friends of the NNPDF who are all raising
funds and awareness through the
11-11-11 Challenge
. One hundred percent of the funds raised by the Challenge will go to support research, designated by disease type (ASMD/Types A & B or NPC).
If you, too, have decided to take on the 11-11-11 Challenge, please
contact the NNPDF
so we can add your name to the list below. Thank you!
**Those in orange font indicate NNPDF Board Member involvement**
| Bexton Family (MI) - in Honor of Kaitlyn Bexton and in Memory of Alexandria Bexton (both NPC) |
| Bourgeault Family (NC) - in Honor of Kaitlyn Bourgeault (NPA) |
| Cardinal Family (Alberta, Canada) - in Memory of Damon Cardinal (NPA) |
| Chavez Family (NM) - in Memory of daughter Breann Chavez (NPC) |
| Cowie Family (Canada) - in Honor of Sandra Cowie (NPB) |
| Donegan Family (IL) - in Honor of Blake Donegan (NPC) |
| Fagan Family (MI) - in Honor of Mindy Fagan (NPC) |
| Flinton Family (NY) - in Honor of Daniel Flinton (NPC) |
| Follett Family (WA) - in Memory of Emma Shaffer (NPC) |
| Glassman Family (VA) - in Memory of Sarah Glassman (NPA) |
| Higgins Family (NC) - in Honor of Melissa Higgins (NPB) |
| Hughes Family (TX) - in Memory of great-niece Riley Corbitt (NPC) |
| Kehoe Family (RI) - in Memory of Graham Kehoe (NPC) and his dad, Kevin Kehoe |
| Kelly Family (RI) - in Memory of cousin Erin Roberts (NPC) |
| Laffoon Family (AZ)- in Honor of Wylder Laffoon (NPA) |
| Lane Family (NY) - in Honor of grandsons Collin and Cohen Parody (both NPB) |
| Marocco Family (MD) - in Memory of brother Scott Marocco (NPC) |
| Martino Family (Canada) - in Honor of Mariarosa Martino (NPB) |
| McGuire Family (CT) - in Honor of cousin Kelly Thompson (NPC) |
| Minde-Redcrow Family (Canada) - in Memory of Tehyez Minde (NPA) |
| OConnor Smith Family (FL) - in Honor of Annie OConnor Smith (NPB) |
| Papier Family (MD) - in Honor of son Dillon Papier (NPC) |
| Patterson Family (CA) - in Memory of Bailey and Brianna Patterson (both NPC) |
| Purpura Family (NY) - in Honor of Ashlyn Purpura (NPC) |
| Quandt Family (WA) - in Honor of son Ty Quandt (NPC) |
| Quesada Family (NY) - in Memory of Valeria and Fernanda Vargas Arias (both NPC) |
| Reedy-DiGiovanni Family (VT) - in Honor of Chase DiGiovanni (NPC) |
| Roberts Family (MA) - in Memory of daughter Erin Roberts (NPC) |
| Roberts Family (MA) - in Memory of cousin Erin Roberts (NPC) |
| St. Germain Family (Canada) - in Honor of Kaiden St. Germain (NPC2) |
| Stults Family (MO) - in Honor of Brisan and Parker Stults (both NPC) |
| Taillefer Family (Quebec, Canada) - in Honor of Monica Taillefer (NPC) |
| Teller Family (CA) - in Memory of son "Little Roy" Teller (NPC) |
| Vaughan Family (Canada) - in Memory of children Alex and Laura Vaughan (both NPC) |
| Vorpahl Family (WI) - in Memory of daughter Stacey Vorpahl (NPC) |
Haven't heard what the 11-11-11 Challenge is all about? Click here to find out all about the buzz!
[Oct 6, 2011 mem; Dec 5, 2011 mem]
Book about the Life of Chuck Beckman (NPC)
to Benefit NNPDF's Programs of Research
|
Released just in time for October Niemann-Pick Disease Awareness Month, What Matters Most: Living with the Young Adult Onset of Niemann-Pick Disease Type C (NPC) is a new book by Rozetta Beckman about her family's journey through Niemann-Pick Disease. NPC took the life of Rozetta's son, Chuck, at the age of 36. He was diagnosed with NPC as a young adult, after symptoms began to surface when he was about 18 years old. Proceeds from the book will be donated to the NNPDF for research into NPC. To see a preview of the book and to place an order, visit: http://www.lulu.com/spotlight/chuckNPC [Oct 3, 2011 mem; Dec 5, 2011 mem] |
Vegas Casino Night in Kansas City
|
[Oct 11, 2011 mem; Dec 5, 2011 mem]
Saturday, October 29
11 a.m. - 4 p.m.
Simi Valley, California
|
Mitchell Brubaker (right) and his parents,
Mark and Terri |
The Brubaker family will sponsor a Fundraiser Boutique in honor of Mitchell Brubaker. The event will raise awareness of Niemann-Pick Disease Type C and funds in support of the NNPDF. Several vendors will be present selling a variety of products and services. A bake sale and raffle will round out the day's activities.
The event will be held on Saturday, October 29, from 11:00 a.m. to 4:00 p.m. at EV Free Church in Simi Valley, California. For more information, email Terri Brubaker .
[Sept 14, 2011 mem]
5th Annual Niemann-Pick Disease Golf Tournament
In Memory of Katlyn "Buggy" Sumbad
Saturday, October 29, 2011
Stevinson Ranch Golf Club
Stevinson, California
|
Katlyn Rose Sumbad (NPA)
4/8/06 - 11/24/08 |
The 5th Annual Katlyn Sumbad Memorial Golf Tournament will be held on Saturday, October 29, at the Stevinson Ranch Golf Club . Proceeds will advance research into Niemann-Pick Disease Types A/B (ASMD) and the NNPDF's Quest for a Cure.
The event will be a four-person scramble, with the first tee time at 9:00 a.m. Raffles and a silent auction will be held in conjunction with the event. Lunch, cart, tee prize, and range balls are included with the entry fee.
For complete details and entry information, please see the tournament flyer . The entry deadline is October 14.
[July 27, 2011 mem]
5th Annual Walk-a-Thon
Woodville, Alabama
Saturday, October 22, 2011
9:00 a.m.
|
Riley Corbitt (NPC)
7/27/02 - 10/29/08 |
The 5th Annual Walk-a-Thon for NPD will be sponsored by the Woodville Student Government Association students, friends and family on Saturday, October 22. The 10-mile event will begin at Woodville High School at 9:00 a.m., making a loop to end back at the school. Refreshments will be served at three rest stops along the route.
All proceeds will be donated to the NNPDF in memory of Riley Corbitt, who lost her battle with Niemann-Pick Disease Type C on October 29, 2008, at the age of 6 years.
[Oct 4, 2011 mem]
"Blue Hawaii" Birthday Party
Mt. View Elementary School
Edgewood, Washington
Friday, October 21, 2011
6:00 - 8:00 p.m.
| "Elvis" (aka Ty Quandt) enjoyed "Blue Hawaii" with teachers and friends | |
Update: Not only was Elvis (aka Ty Quandt) "in the house," but he was ROCKIN' it, as evidenced by the photos above and the video (see link below)! Ty's "Blue Hawaii" 15th birthday bash was a huge success, with approximately 200 people in attendance. Party-goers enjoyed music by, of course,"The King," a hula lesson, hula hoop and limbo contests, raffles, food, drinks, and special photos. Many thanks to all who attended, and those who helped make the party such a smash, especially "King"-pin organizer Nancy Kreuger!
Check out the
YouTube video
of Elvis and Priscilla (aka Ty and Cindy)!
Friends, family, schoolmates and community members will come together on Friday night, October 21st, to celebrate the 15th birthday of Ty Quandt and to celebrate the return of "The King!"
Elvis (aka Ty) will be "in the house" (Mt. View Elementary School) that evening, with a Blue Hawaii-theme, complete with souvenirs, memorabilia, leis, food and music. Funds raised will benefit the NNPDF in honor of Ty.
Happy Birthday, Ty!
[Sept 9, 2011 mem]
"Coins for Comments"
Blog Raises Funds for NNPDF
| Tylor White-Richardson (NPC) |
The family of Tylor White-Richardson is sponsoring a creative fundraising project in honor of Ty's birthday in September and throughout October Niemann-Pick Disease Awareness Month. "Coins for Comments" will work like this: each visitor who leaves a comment on Ty's blog will trigger a donation to the NNPDF from Ty's family. See what Ty has been up to lately -- lots of cool photos with Ty, his family and friends, too! Time with Ty blog
Ty's family is going all-out for October Awareness Month, with several other events, as well: a Hair Cut-a-Thon; a presentation to Moms and Me group; "Tilt 4 Tylor" event at Farley Speedway; Walk for Wishes; and proclamations by the Governor of Iowa and for the City of Dubuque.
[Sept 7, 2011 mem]
Rummage Sale to Benefit NNPDF
Saturday, October 15, 2011
San Diego, California
|
"Little Roy" Teller (NPC)
2/26/90 - 12/20/03 |
The Teller family will be having a rummage sale to benefit the NNPDF at "Kobey's Swap Meet" in San Diego, CA, on Saturday, October 15. Kobey's has been voted the #1 swap meet in San Diego, and 100% of the Teller's proceeds will be donated to NNPDF in memory of their son, "Little Roy." The swap meet's organizers are donating two vendor stalls to the Tellers in support of their fundraising efforts.
The family is also displaying NNPDF posters in the workplace, and will participate in the 11-11-11 Challenge by sending letters to all their friends and family, asking for an $11 donation for research into NPC.
[Sept 29, 2011 mem]
Otis Spunkmeyer Cookie Dough Sale
September 29 - October 14, 2011
Naugatuck, Connecticut
|
Bryanna DeSouza (NPC) with her mom, Judy
|
Judy DeSouza will hold a cookie dough sale fundraiser in memory of her daughter, Bryanna, taking orders from Thursday, September 29 through Friday, October 21. The tubs of Otis Spunkmeyer frozen cookie dough will be available for pickup from Judy during the week of November 6 (details on time, location, etc., will be provided to those who place orders).
The cookie dough is pre-portioned for perfect cookies with a minimum of work, and the tub will last up to a year in the freezer. The dough contains no trans fats and is Kosher certified.
Each tub sells for $15.00, and $6.00 from the sale of each tub will be donated to the NNPDF in Bryanna's name. Bryanna DeSouza passed away from the effects of Niemann-Pick Disease Type C in 2006, at the age of 14.
For more information about dough varieties or to place an order (local to Naugatuck, CT only), email Judy .
[Aug 23, 2011 mem]
Feather Hair Extensions Fundraising Events
Sackets Harbor, Watertown and Dexter, New York
| Collin and Cohen Parody (both NPB) |
In honor of Collin and Cohen Parody of Dexter, New York, Brittany Pierson and Sarah Countryman of Hairquarters at the Barracks in Sackets Harbor are offering blue feather hair extensions for $10 each through October. Proceeds will benefit the National Niemann-Pick Disease Foundation. If ten or more people want hair extensions, Brittany and/or Sarah will come to the place of business to provide the service. Please call Hairquarters at 315-775-6607.
Sarah and Brittany will also offer the hair extensions at Kathy Lane's garage on Friday, September 30th, beginning at 3:45 p.m., and at the Jefferson Community College Commons on Monday, October 3rd, during free hour. For more information see the flyers linked below, or call Kathy Lane at 315-778-7079 or visit her in room 5-004 at JCC.
Luanne at A New Attitude Salon and Spa in Watertown will also offer the feather hair extensions as a fundraiser in honor of the Parody boys. Please call 315-788-2639.
Blue Feather Hair Extensions Flyer Garage Event Flyer JCC Event Flyer
[Sept 28, 2011 mem]
Wine and Cheese Night
Torrington, Connecticut
| Kelly Thompson (NPC) |
Becky and Brad McGuire will host a wine and cheese night to raise funds for NPD in honor of Becky's cousin, Kelly Thompson (NPC).
[Oct 6, 2011 mem]
Dillon Papier Charity Golf Tournament
Friday, October 7, 2011
Middletown, Maryland
| Dillon Papier (NPC) |
This year's annual Dillon Papier Charity Golf Tournament is scheduled for Friday, October 7, 2011. Registration will begin at 9:00 a.m., with a shotgun start at 10:30. 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 Hollow Creek Golf Club, 50 Glenbrook Drive, Middletown, MD, 21769; Tele: 301-371-0400.
Visit
www.hollowcreekgolfclub.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 see the brochure or contact Mike Hayden for details, or visit www.dillonsfight.org .
This event benefits the National Niemann-Pick Disease Foundation. Details and registration forms are available here .
[May 11, 2011 mem]
"Take Your Family Out to Dinner Night"
Wednesday, October 5, 2011
Altamonte Springs, Florida
| Gabrielle LaVerde (NPC) |
Sweet Tomatoes restaurant in Altamonte Springs, FL, will sponsor "Take Your Family Out to Dinner" night on Wednesday, October 5th, from 5:00 to 8:00 p.m. The restaurant will donate 20% of the evening's proceeds to the Let's Do This Foundation in honor of Gabrielle LaVerde (NPC). Visit Lets-Do-This.org for more information and a flyer.
The Let's Do This foundation is also planning a holiday boutique for early December, and they are seeking arts, crafts or holiday-themed donations.
[Sept 29, 2011 mem]
Dragon Boat Team Competes for NNPDF
Philadelphia, Pennsylvania
October 1, 2011
| Team "lifesavERs" competed in the 2011 Philadelphia International Dragon Boat Festival on October 1st, raising money for the National Niemann-Pick Disease Foundation in honor of the Coppola family of Bristol. Many of the team members are doctors, nurses and medical personnel from Aria Torresdale Hospital. The team placed very well, at 21st out of 157 teams! Team shirts carried the NNPDF motto of "PERSEVERE." | |
[Oct 11, 2011 mem]
"Let's Do This" Foundation's Iron Butterflies Family Picnic for Gabrielle LaVerde
Saturday, September 24, 2011
10:00 a.m.
Lake Mills Park
Chuluota, Florida
The "Let's Do This" Foundation is sponsoring a family fun picnic to raise funds to assist the LaVerde family with the needs associated with caring for Gabrielle, who is affected by Niemann-Pick Disease Type C.
The event is open to the public. Pre-registration tickets are $6.00 and include lunch and entry in the main raffle. Each pre-registered ticket includes up to two (2) children’s (ages 12 and under) food tickets. Registration the day of the picnic will be $7.00.
For more details and registration information, please see the event flyer: Flyer/poster about the event or visit the foundation's Web site: http://www.lets-do-this.org/gabi.html
[Sept 6, 2011 mem]
|
|
The Marcello and Matthew Perugini Memorial Walk for Niemann-Pick Disease
|
Please join the Perugini family and friends on September 18, as they walk in memory of Marcello and Matthew Perugini, who both passed away from the effects of Niemann-Pick Disease Type C. There will be food, music, raffles, prizes, and special activities for the children.
The event will be held at the track of Holy Cross High School, 587 Oronoke Road, Waterbury, beginning at 1:00 p.m. Participants will receive a wristband, and food and water will be provided. The individual walker and the team with the largest donations will be awarded prizes, and restaurant gift certificates and other prizes will be raffled off.
A $10 donation per walker is requested, with proceeds benefiting the NNPDF. Donations of prizes and cash will also be gratefully accepted. For more details, check out this letter to participants from event organizer Gianni Perugini and the event registration form .
Heartfelt thanks to event sponsors -- Frankies: The Gourmet of Fast Food; Crystal Rock Bottled Water; and Holy Cross High School.
[Aug 30, 2011 mem]
Hunter's Hope Memorial 15th Annual Drive for the Cure
Golf Tournament and Auction
Friday, September 16, 2011
Hanging Rock Golf Club
Salem, Virginia
|
Hunter Ozmer (NPC)
|
The 15th Annual "Hunter's Hope" Memorial Golf Tournament and Auction fundraiser to benefit the National Niemann-Pick Disease Foundation will be held on Friday, September 16. The $100.00 Hunter’s Hope tournament package includes golf cart, greens fee, awards dinner, and competitive awards. Four-person teams may be all-men, all-women, or co-ed. Single entrants will be placed with a team. The Hunter’s Hope tournament will have a shotgun start at 1:00 p.m., with the awards dinner and auction beginning at 6:00 p.m. under tents next to the clubhouse. Non-golfers are also invited to come and participate in the auction. Many very nice auction items will be available including artwork, pottery, furniture, jewelry and sports memorabilia items. Auction items may be viewed in advance at the Hunter’s Hope Memorial Web site, along with more details on how to register. Visit www.huntershopememorial.com . |
[Aug 8, 2011mem]
Vote for Race for Adam
Song and Video Contest to Award $1000 to Winner
|
| Adam Recke (NPC) and Family |
Salisbury High School (Allentown, Pennsylvania) students Casey Creveling and Alan Mendez wrote a song and entered it in a contest to win $1,000 for the charity of their choice. They chose the Race for Adam Foundation, and their video is now one of the finalists! The song is beautiful and the video is awesome!
To view the video and cast your vote for Race for Adam, please visit: http://www.1gforgood.com Voting ends September 1st.
[Aug 25, 2011 mem]
Lehigh University Football
Seasoner Opener to Benefit Race for Adam Foundation
Saturday, September 10, 2011
Bethlehem, Pennsylvania
Lehigh University fans will celebrate Community Day on Saturday, September 10, with Lehigh's football home opener. Special events before and after the game will raise awareness and funds for the fight against Niemann-Pick Disease Type C, benefiting the Race for Adam Foundation in honor of Adam Recke (NPC).
Community Day attendees will enjoy music, inflatable toys and games, face-painting, and a post-game autograph session with Lehigh players.
To purchase tickets call 610-758-4263, visit the Grace Hall ticket office, or purchase tickets on game day. Be sure to indicate that you are supporting the Race for Adam Foundation. For additional information visit RaceforAdam.org or LehighSports.com .
[Aug 26, 2011 mem]
[Sept 14, 2011 mem]
2011 Frederick Keys Benefit and Dillon's 9th Birthday Party!
Saturday, August 27, 2011
5:30 p.m.
Frederick, Maryland
| Dillon Papier (NPC) and family |
Help celebrate Dillon's 9th birthday by enjoying a ballgame with friends and family on Saturday, August 27, at 5:30 p.m. at the Frederick Keys Harry Grove Stadium. Dillon will be throwing out the first pitch at 6:00, and spectacular fireworks will follow the game. No gifts, please -- just come and join us for some fun and to help in our fight against Niemann-Pick Disease Type C.
Tickets for reserved seats are $10 each (50% tax deductible). For tickets, contact Darlene Gelsleichter or Darrile Papier
Donations may be mailed to: NNPDF; ATTN: Dillon Papier; 9741 Royal Crest Circle; Frederick, MD; 21704
For further details, see the printable poster/flyer .
We thank you from the bottom of our hearts for providing "The Gift of Hope!"
[Aug 8, 2011 mem]
[Sept 14, 2011 mem]
|
2nd Annual Zoe's Fun Run
|
|
Zoe Bachman (NPA/B)
12/19/03 -6/9/06 |
Printable poster for the event (pdf)
[July 5, 2011 mem]
2nd Annual Ryde 4 Tylor
Saturday, August 13
12:00 Noon
Knickers Saloon
Dubuque, Iowa
|
Tylor White-Richardson (NPC) at the
1st Annual Ryde 4 Tylor Event |
The 2nd Annual Ryde 4 Tylor will be held on Saturday, August 13th, departing from Knickers Saloon, Dubuque, Iowa, at 12:00 noon, sharp. The ride is scheduled in honor of 14-year-old Tylor White-Richardson, who is affected by Niemann-Pick Disease Type C.
Registration for the ride will be $10 per person. Stops will be determined at a later date. PERSEVERE wristbands will be available before and during the ride.
[May 19, 2011 mem]
RAGBRAI Team to Ride in Honor of Tylor White-Richardson
July 24 - 30, 2011
Iowa
| RAGBRAI Team "Ride4Tylor" with honoree Tylor White-Richardson (NPC) |
2011 RAGBRAI (The Register's Annual Great Bicycle Ride Across Iowa) participants and spectators will learn about Niemann-Pick Disease as the Ride4Tylor team again makes the long trek in honor of Tylor White-Richardson (NPC). Tylor is the 14-year-old son of Ryan and Jill Richardson of Galena, Illinois, and Jenn White and Brian Simon of Dubuque, Iowa.
The 2010 Ride4Tylor team members included, left to right in photo above, Ellen Henkels, Fran Henkels, Clay Wilwert, and Janelle Wilwert, all of Dubuque. Team organizer Janelle Wilwert is a good friend of Tylor's family and Ellen Henkels teaches art at Jefferson Middle School where Tylor attends.
The 2011 RAGBRAI, in its 39th year, is the oldest, largest and longest bicycle touring event in the world. Crossing Iowa from the Missouri River on the west (Glenwood, IA) to the Mississippi River on the east (Davenport, IA) the RAGBRAI route averages over 470 miles.
[May 19, 2011 mem]
Tri-Athlete Raising Awareness of Niemann-Pick Type B
| Annie OConnor-Smith (NPB) |
Annie OConnor-Smith continues to inspire others with her courage and perseverance in the face of Niemann-Pick Disease Type B. Most recently, Annie and her husband, Mike Smith, participated in the Military Challenge race at the Virginia Beach Sportsplex while in Virginia for the NNPDF's 2011 Family Support and Medical Conference.
The Military Challenge was "an ultimate military style confidence course" featuring a 5K run/obstacle course designed to challenge even the most fit individual. Civilians competed alongside members of the military and took on obstacles used in military training.
Just a couple of weeks prior, Annie logged another active weekend of extreme sports:
Friday I rode my bike 40 miles...I have done countless running and road triathlons but I did my first Xtera triathlon last Saturday...I used my daughter's hybrid bike which made it more difficult when everyone else had mountain bikes. We swam in two hot, shallow lakes, running between the two, rode through the woods with tight turns and two logs that were two or three feet off the ground that I had to carry the bike over, deep sugar sand that I also had to drag the bike through, and palmetto bushes and scrub oak trees that I had to navigate through, and a silly caution tape spiral maze at the end.
We also ran through the woods, including jumping over the logs, and then climbing up a wet blow-up slide and sliding down into a pool of muddy water...then a short run on the lake beach. My husband Mike and I each got second in our age group. The next day, we got up early and did an annual bridge-to-bridge swim (almost 4 miles) with a group of swimmers and kayakers. I did a relay with another woman and we traded swimming and kayaking...so we each swam almost two miles. We wore fins for the later part of the swim so we came in about mid-pack.
Impressive! Go, Annie, go!
[Aug 8, 2011 mem]
4th Annual Riley's Run
Woodville, Alabama
Saturday, July 23, 2011
Registration 9:30 a.m.
|
Riley Corbitt (NPC)
7/27/02 - 10/29/08 |
The 4th Annual Riley's Run will be held on Saturday, July 23, to raise awareness into Niemann-Pick Disease and funding for research to beat it. 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.
Registration for the event will begin at 9:30 a.m. at the Woodville High School, with departure at 10:00. Registration is $20; $10 for each extra hand. Lunch will be provided during the ride, with a live band and cookout at the end.
[July 14, 2011 mem]
Dubuque Bruisers to Host Fundraising and Awareness Event
Saturday, July 23, 2011
Dubuque, Iowa
|
Tylor White-Richardson (NPC) with a
|
Semi-pro football team, the Dubuque Bruisers (Iowa), will dedicate their home game event on Saturday, July 23, in honor of Tylor White-Richardson (NPC). T-shirts and posters will include the NNPDF logo and information, and game attendees will have the opportunity to learn about Niemann-Pick Disease at an information table and through a halftime presentation. Local radio and newspaper media will cover the event, as well.
[May 19, 2011 mem]
Johnathan's Dreams - Cure NPC
July 9, 2011
|
Johnathan's Dreams - Cure NPC was held at the Fortino Winery on July 9th, 2011, to raise awareness of Niemann-Pick Disease and funds for the NNPDF in honor of Johnathan Spencer-Merrill (NPC). Five-year-old Johnathan is the son of Rebecca and Keith Spencer of Gilroy, California.
http://www.johnathanspencer.org/index.html
[Dec 6, 2011 mem] |
||
|
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New Britain Rock Cats Baseball Game
|
Catch the future stars of the Major Leagues! Join the Perugini family and other Connecticut families affected by Niemann-Pick Disease as they raise awareness and funds for research at this special night out at the ballpark!
The New Britain Rock Cats (Double A Affiliate of the Minnesota Twins) will donate half the proceeds from ticket sales for their game against the Binghamtom Mets on Friday night, July 8th. If the Peruginis and company can sell at least 200 tickets, the NPD cause will benefit from concession sales that evening, as well. PERSEVERE wristbands will also be available at the event.
Tickets are just $8 and include the ballgame and fireworks! Proceeds benefit the NNPDF. Flyer with ticket order form
This event is being held in memory of Marcello and Matthew Perugini, who both died from the effects of Niemann-Pick Disease Type C. Read the letter from their cousin, Gianni Perugini , which gives more information about the baseball event.
The Perugini family will also hold their annual Marcello and Matthew Memorial Walk, in September this year. The July baseball event marks Matthew’s birthday month, and the September walk event will mark Marcello’s birthday month.
For further information, see the flyer linked above for event organizer Gianni Perugini's contact information.
[May 3, 2011 mem]
Elementary Students Raise Funds for NNPDF with Mini-Grant Project
Fort Atkinson, Wisconsin
|
Martina Walling, Linda Walling, Barb Vorpahl
and Dakota Olszak |
Stacey Vorpahl (NPC)
|
Fourth-graders Martina Walling and Dakota Olszak recently conducted a fundraiser to benefit the NNPDF in memory of Stacey Vorpahl. Stacey, the daughter of Barb and Gary Vorpahl, passed away from the effects of Niemann-Pick Disease Type C at the age of 19. The Vorpahls are neighbors of the Walling family, and Martina's mother, Linda Walling, helped care for Stacey during her illness.
The two students applied for and were awarded a mini-grant for seed money for their project; then they collected donations of prizes for a raffle. Prizes included autographed sports memorabilia, tickets to major tourist attractions, passes to the county fair, tickets to professional sporting events, restaurant gift certificates, etc. The girls set up an informational display and sold raffle tickets at two all-school events and at a local grocery store, raising over $750 for the fight against Niemann-Pick Disease.
Complete list of raffle prizes/donors
[July 5, 2011 mem]
2nd Annual Iron Pigs Game Fundraiser
June 26, 2011
1:30 p.m.
Allentown, Pennsylvania
The second annual Iron Pigs fundraiser for the Race for Adam Foundation will be held Sunday, June 26, 2011, in honor of Adam Recke (NPC). The Iron Pigs are a Triple-A affiliate of the Philadelphia Phillies baseball team, playing at Coca Cola Park in Allentown, Pennsylvania.
Only 400 tickets are available (seats in Section 102). Visit www.raceforadam.org for more details and to order tickets.
[Dec 9, 2010 mem]
9th Annual Alex and Laura Vaughan Memorial Golf Tournament
Stone Tree Golf Course
Owen Sound, Ontario
Saturday, June 25, 2011
|
Alex Vaughan (NPC)
|
Laura Vaughan (NPC)
1/16/95 - 11/8/01 |
The 9th Annual Alex and Laura Vaughan Memorial Golf Tournament is being planned for Saturday, June 25. The tournament is an annual event held in memory of the children of Allan and Tammy Vaughan of Durham, Ontario. Tammy is the Chair of the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF), and is also a member of the NNPDF Board of Directors.
Here is a letter from the Vaughan family seeking sponsors, donors and participants for the event which is a major fundraiser for the CCNNPDF:
Isn’t the sun getting warmer? Do you hear the robins every morning? Isn’t summer right around the corner? It’s April 1st and it’s a glorious feeling to know that in the next few weeks the trees will be budding, early spring flowers will be blooming, and best of all – WE SHOULD BE OUT ON THE GOLF COURSE! So in my books that means that it’s time to get planning the 9th Annual Alex and Laura Vaughan Memorial Golf Tournament - 9 years – where does the time go?
2011 will mark 19 years since we lost our courageous wee man Alex, and 10 years since we lost our little princess Laura – again – where does the time go? There isn’t a day that goes by that both of our precious children don’t come to mind. Alex at 23 – where would he be, what career path would he have chosen? Laura at 16 would probably be terrorizing us on the roads as she would have begun driving – what we wouldn’t give to be able to have had the opportunity to sit beside her, terrified, as she learned to drive. But Alex and Laura aren’t with us so we cherish the wonderful memories of each of these precious angels and remember the way that they touched the hearts of everyone that had the good fortune to come into contact with them and know them.
As you have heard us say many times before our mission in life is to do our part to eradicate this life stealing disease. If we can stop even one family from experiencing the life altering, devastating experience of losing a child to this disease our goal will be accomplished.
Again we are asking for your support for the 9th Annual Alex and Laura Vaughan Memorial Golf Tournament. A monetary donation, a donation of a prize for the silent auction table, a donation of a prize for the raffle, your presence as a golfer – one or all of these would be so greatly appreciated.
Again this year we will be hosting the tournament at the Stone Tree Golf Course in Owen Sound on the 25th of June. It will be another day of fun, laughter and camaraderie.
Our success to date would not have been possible without the support of you, our friends and family. We thank you from the bottom of our hearts for your support in the past and ask for it once again this year with your support of the 9th Annual Alex and Laura Vaughan Memorial Golf Tournament.
See you on the 25th of June, friends!
Allan, Michael and Tammy
For more information or to donate, email Tammy Vaughan .
[Apr 1, 2011 mem]
Hanover 5-K Road Race & Walk
"Erin's Run"
Saturday, June 25, 2011
Hanover, Massachusetts
| Erin's family | Erin Roberts 1980 - 2004 |
The Hanover (MA) Chamber of Commerce will sponsor the annual Hanover 5-K Road Race and Walk on Saturday, June 25. A portion of the proceeds will benefit the NNPDF in memory of Erin Roberts. Erin, the daughter of Michael and Holly Roberts, and sister of Rebecca Jurgela, passed away in 2004 at the age of 24, from the effects of Niemann-Pick Disease Type C (NPC).
Entry is $20 by June 10; $25 after June 10 and on race day. Start time will be 9:00 a.m. T-shirts will be given to participants registered by June 10. Flyer with details and entry form or register online at www.active.com .
[May 20, 2011 mem]
|
Flameless Candles and Jewelry Fundraiser Benefits NNPDF
|
| Mitchell Brubaker (NPC) |
[June 23, 2011 mem]
Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction
Saturday, June 18, 2011
Spring Creek Golf Center
Cold Spring, Wisconsin
| The Vorpahl Family 2010 |
Stacey Vorpahl (NPC)
1/3/85 - 10/9/04 |
2011 Silent Auction Items listing.......updated and posted here: 2011 Auction List updated June 17th
Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, June 18, in memory of their daughter, Stacey (NPC), who passed away in 2004. This event will benefit the National Niemann-Pick Disease Foundation to support research into treatments and a cure for Niemann-Pick Disease.
To sign up for a tee time, please call Spring Creek Golf Center at 920-563-4499.
Watch this space for further details, including a list of silent auction items. Please print out this flyer and post it at your place of employment, church or school.
[Apr 26, 2011 mem]
6th Annual Bowie Baysox Dillon Papier Benefit
Prince George's Stadium
Bowie, Maryland
Sunday, June 5 at 2:05 p.m.
|
Dillon Papier (NPC), age 8 years, and his parents,
Darrile and Mark Papier |
Enjoy a ballgame with friends and family on Sunday, June 5th, at 2:05 p.m. at the Bowie Baysox Stadium, and join the fight against Niemann-Pick Disease Type C (NPC). This fundraiser is being held to benefit the NNPDF in honor of Dillon Papier (NPC), who LOVES playing and watching baseball!
In addition to ticket sales, donations to the cause will be gratefully accepted, as well. Please be as generous as you can, as time is Dillon's enemy, and the enemy of everyone whose lives this devastating disease has touched.
Funds raised by this event will support the essential research which will find effective treatments and a cure for NPC.
Tickets are: Lower reserved seating $14 (50% tax deductible).
For tickets, contact Dillon's loving grandmother,
Maris Walker
.
Check out this flyer for more information. Visit www.dillonsfight.org for more about Dillon and other upcoming events.
[May 11, 2011 mem]
Ducks for Bucks
Annual Family Fun Day
Saturday, June 4, 2011
|
Breann Chavez (NPC)
2/10/03 - 6/8/06 |
Breann's parents, Jami and Lisa Chavez, prepare to
launch the ducks. |
Dainty Duck Dash! Family Fun Day! Games and Prizes! Raffles! Silent Auction! Live Music! Food!
And Wines of the San Juan!
The 5th Annual Ducks for Bucks event will be held on Saturday, June 4, in memory of little Breann Chavez. Breann, the daughter of Jami and Lisa Chavez, passed away from NPC in 2006, at the age of 3 years.
For more information, visit Ducks for Bucks or look for Ducks for Bucks on Facebook.
[Apr 19, 2011 mem]
Fishing for Charities Tournament
May 28, 2011
Claytor Lake, Virginia
Fishing For Charities is a bass fishing tournament trail that is devoted to raising money for various charities. The NNPDF will be the beneficiary of funds raised on May 28, 2011, at Claytor Lake, Virginia, in honor of Raiden Linkous (NPC).
For full details including registration information, rules, etc., please visit
www.fishingforcharities.net
.
The Online Outdoorsmen magazine, Online Fishermen (scroll to pages 46-47) , ran this story (PDF) about Fishing for Charities and Dwayne Linkous' work to raise funds through this Tournament Trail.
| Dwayne Linkous' boat -- in honor of his son, Raiden. How COOL is THAT?! | |
[Nov 30, 2010 mem]
Steelhawks Sponsor "Race for Adam" Night
|
The Lehigh Valley Steelhawks Indoor Football League team has designated their May 21st matchup against the Fairbanks Grizzlies as "Race for Adam" Night. Partial proceeds from pre-registered ticket sales will benefit the Race for Adam Foundation. Additional events will be held throughout the evening to raise donations and awareness of Niemann-Pick Disease.
For tickets call 610-282-3100, and mention Race for Adam. Event flyer
Also, for the entire month of May, Starters Restaurants will donate 10% of each food receipt when the coupon on the Steelhawks/Race for Adam flyer (linked above) is presented.
For more information visit www.raceforadam.org or www.lvsteelhawks.com .
[May 6, 2011 mem]
Frankie Valli, Kathie Lee and Regis to Shine Spotlight on NPC
Palace Theatre
Stamford, Connecticut
Friday, May 20, 2011
An all-star team will come together on Friday, May 20, to raise awareness and funds in support of the Marella family of Greenwich, Connecticut, and their foundation, Dana's Angels. Two of Phil and Andrea Marella's children are affected by Niemann-Pick Disease Type C.
Frankie Valli & the Four Seasons will perform in concert, emceed by Kathie Lee and Frank Gifford, with special guest Regis Philbin. The evening will include a pasta bar by Rao's Italian Restaurant. Tickets, which start at $300, are available at
www.danasangels.org
.
Read the
article
by Lisa Chamoff, posted at www.greenwichtime.com.
[May 16, 2011 mem]
Basketball Tournament to Benefit NNPDF
Loganfest IV at Kalles Junior High
Puyallup, Washington
May 14, 2011
| Ty Quandt (NPC) and mom, Karen |
The fourth annual Loganfest at Kalles Jr. High School, Puyallup, Washington, will hold a 3-on-3 basketball tournament May 14th, to raise money for the National Niemann-Pick Disease Foundation. This fundraiser is dedicated in honor of Ty Quandt (NPC), a student at Kalles, and son of NNPDF Board Chair Karen Quandt and her husband, Gene.
This successful event has benefited several Kalles students in their fights against serious illnesses including Neuroblastoma, Hodgkin's Lymphoma and Niemann-Pick Disease Type C.
[Jan 26, 2011 mem]
| In memory of our friend, Emily |
Emily Hrbacek (NPC)
7/15/99 - 7/1/10 |
Eureka (Missouri) Elementary School will hold its 3rd annual popcorn fundraiser in memory of student Emily Hrbacek, who lost her battle with Niemann-Pick Disease Type C (NPC) last summer. All funds raised will benefit the National Niemann-Pick Disease Foundation to support research into treatments and a cure.
Bags of popcorn will be 25 cents each, and additional donations will be welcome!
Printable flyer (PDF)
Visit Emily's Web site at:
http://www.caringbridge.org/visit/emilyhrbacek
[Apr 19, 2011 mem]
Race for Adam
6th Annual 5K Run/Walk
May 7, 2011
Allentown, Pennsylvania
|
|
| Adam Recke (NPC) and Family |
The 6th Annual Race for Adam 5K Run/Walk will be held Saturday, May 7th, at Lehigh Parkway, Allentown, Pennsylvania. Highlights of the event include live music, raffles, children's entertainment, food and beverages, and much more. The race route is fast with short hills, over a very scenic course. There are categories for men and women from 14 years and up.
The Lehigh Valley Steelhawks of the Indoor Football League will participate in the event. Also, for the entire month of May, Starters Restaurants will donate 10% of each food receipt when the coupon on the Steelhawks/Race for Adam flyer is presented.
Visit www.raceforadam.org for more details on this event and others being planned for later in May.
[Dec 9, 2010 mem]
Park Playground and Trees Dedication
Bob Berry Park
Eureka, Missouri
Saturday, May 7, 2011
11:00 a.m.
|
Emily Hrbacek (NPC)
7/15/99 - 7/1/10 |
The ribbon will be cut on a new City of Eureka Park, with a playground dedicated in memory of Emily Hrbacek (NPC), and Gus, a good friend of hers who also passed away in 2010. The new park is named in honor of former Eureka Mayor Bob Berry. Mr. Berry wanted the park to have a special place honoring Emily and Gus, who, the mayor says, both made an incredible impact on him and his life. Two trees have also been planted in the new park in memory of Emily.
There will be a public dedication ceremony of the Emily and Gus Playground and the special trees on May 7th, at 11:00 a.m. Following the dedication there will be a light lunch of hot dogs provided by the Eureka Parks and Recreation Department.
The park is located on Forby Road. In the event of rain the dedication will be postponed until May 14.
[Apr 18, 2011 mem]
Vegas in the Valley to Benefit Hadley Hope Fund
Saturday, April 30, 2011
Medford, Oregon
|
Peyton and Kayla Hadley (NPC) |
The Hadley Hope Fund is pleased to announce the 2nd Annual Vegas in the Valley event. The event will be held in the ballroom of the Rogue Valley Country Club in Medford, Oregon, in honor of Peyton and Kayla Hadley (both NPC). Attendees will enjoy a fabulous evening of food, drinks and Vegas-style gaming! Play Texas Hold'em, Blackjack, Craps and Roulette for a chance to win great prizes. A silent auction will round out the entertainment.
Tickets are $45 each, with proceeds benefiting the Hadley Hope Fund.. ( Order tickets online ) Sponsors for the event are being sought. Please email Bryan and Laura Hadley at [email protected] for sponsorship details.
[Feb 9, 2011 mem]
"Chili for Lily" Awareness and Fundraising Event
Friday, April 29, 2011
Enterprise, Northwest Territories, Canada
The co-workers of Kathy Beaupre are planning an awareness and fundraising event called "Chili for Lily." The event, scheduled for April 29, is in honor of Kathy's granddaughter, Lily Beaupre, who is affected by Niemann-Pick Disease Type A.
PERSEVERE wristbands, along with NNPDF newsletters and brochures, will be distributed at the event.
[Mar 17, 2011 mem]
Bowling Fundraiser Event
Huntingdon, Quebec
Saturday, April 16, 2011
| The Taillefer Family |
A bowling fundraiser event will be held on Saturday, April 16, to raise money for the CCNNPDF in honor of "Tiny but Mighty Baby Monica" Taillefer. Monica is the 19-month-old daughter of Simon Taillefer and Heather Patenaude of Grand-Mere, Quebec.
The fundraiser, spearheaded by Heather's sister, Julie, will be held in the Taillefer family's hometown of Huntingdon, and will feature bowling, door prizes, raffles and a hot dog sale. Generous sponsors are being sought for the donation of prizes, raffle items, and financial donations.
The event will go from 10:00 a.m. until 6:00 p.m., and will be held at the Huntingdon Bowling Alley, 115 Rue Lake, Huntingdon, Quebec.
For more information or to become a sponsor, please email Julie Patenaude . To learn more about the Taillefer family's determination to live every day to the fullest in spite of their baby's diagnosis of Niemann-Pick Disease Type C, please click here .
[Mar 31, 2011 mem]
Fourth Annual Ryan's Ride Poker Run
American Legion Riders Chapter 75
Crestview, Florida
Saturday, April 2, 2011
|
|
|
Ryan Richardson (NPC)
5/27/00 - 10/18/05 |
Dry bar, made by Ryan's Grandpa
Dave, auctioned at the event |
UPDATE: Two hundred people showed up for the 4th Annual Ryan's Ride event, with 140 riders registered! The beautiful dry bar pictured above was auctioned at the event. It was handmade by Ryan's loving grandpa, Dave.
The American Legion Riders Chapter 75 of Crestview, Florida, will once again ride and raise money to fight Niemann-Pick Disease in memory of little Ryan Richardson (NPC), who lost his battle against Niemann-Pick Disease in 2005, at the age of five.
The ride will be held on Saturday, April 2, with proceeds benefiting the NNPDF. Breakfast will begin at 8:30 and registration ($10 per poker hand) at 9:00 a.m. Prize presentations will be at 2:00 p.m. The event will include raffles, 50/50 raffles, and an auction.
Poster/flyer about the event Info for event sponsors
[Jan 24, 2011 mem]
Yankee Candle Fundraiser to Benefit NNPDF
March 17 - 31, 2011
Naugatuck, Connecticut
|
Bryanna DeSouza (NPC)
1/20/92 - 12/5/06 |
Judy DeSouza will again host a Yankee Candle Fundraiser to benefit the NNPDF in memory of her daughter, Bryanna. A refreshing and renewing variety of scents are offered for spring and summer, along with all the traditional Yankee Candle seasonal favorites. Flower bulbs, seed sets, shopping totes, and quality all-occasion gift wrap are also available.
Orders will be accepted only from the Naugatuck area, as the products will all be delivered to Judy for distribution. Order between March 17 - 31. Contact Judy for more information or to place an order.
[Feb 9, 2011 mem]
"Wylder Nation" Kickoff Event
Amaro Pizzeria and Vino Lounge, Cave Creek, Arizona
Saturday, March 19, 2011
3:30 - 11:00 p.m.
| Wylder James Laffoon (NPA) |
On Saturday, March 19, "Wylder Nation" will host a Family Fundraiser at Amaro Pizzeria and Vino Lounge in Cave Creek, Arizona. This Wylder Nation Kickoff Event will start with family-oriented activities, including kids' pizza design stations, a craft and children's raffle.
The evening will highlight Amaro's excellent Italian cuisine as Wylder Nation supporters come in for dinner and use their pre-purchased Wylder Nation Gift Certificates, sold during the month prior. Gift certificates are not required for attendance, and gift certificates can be used throughout the year.
The Family Fundraiser will feature seven raffles, to occur every hour from 5 - 11 p.m., and the evening will conclude with games for those age 21-and-over, from 9 - 11 p.m.
Complete event details and sponsorship information Wylder's Web site
[Mar 2, 2011 mem]
10th Annual Life for Luke Annual Gala
Saturday, March 5th, 2011
Riviera Parque Dining, Banquet & Convention Centre
Vaughan, Ontario Canada
|
UPDATE 3/31/11: We received this recap of the 2011 Life for Luke Dinner Dance and Silent Auction Gala from the Liegghios.
|
The Life for Luke Foundation will host its 10th Annual Dinner Dance and Silent Auction Gala in support of the Canadian Chapter of the NNPDF and the Hospital for Sick Children on March 5, 2011. Sumptuous food, superb service, and outstanding entertainment will make for a spectacular evening not to be missed. Door prizes and one-of-a-kind silent and live auction items help ensure no one goes home empty-handed from this very special event. More details The gala will again be held at the elegant Riviera Parque Dining, Banquet & Convention Centre in Vaughan, beginning at 6:00 p.m. For tickets, call 905-850-1870, log on to www.lifeforluke.com , or print out this order form . Organizers are currently seeking sponsors for the dinner, along with monetary donations or donated items suitable for the silent and live auctions, door prizes and/or raffles. Get all the details at: http://www.lifeforluke.com/gala2011.htm or check out this brochure . The Life for Luke Foundation raises money for research in memory of Luke Liegghio, who passed away at the age of 8 years from the effects of Niemann-Pick Disease Type C. Luke was the son of Enio and Lucy Liegghio of Woodbridge, Ontario. Below are a few photos from the 2010 gala. |
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[Nov 29, 2010 mem]
Musher Raising Awareness of Niemann-Pick Disease
Yukon Quest Feb. 5 and Iditarod March 5, 2011
|
Yukon Musher Michelle Phillips
|
Sled dog musher Michelle Phillips will be racing and raising awareness of Niemann-Pick Disease as she competes in The Yukon Quest (beginning February 5th) and the Iditarod (beginning March 5th). Michelle will be racing in honor of little Lily Beaupre (the granddaughter of Michelle's friend, Kathy Beaupre), and distributing brochures and PERSEVERE wristbands to raise awareness about NPD. Lily Beaupre, the daughter of Kathy's son, Yvan, and his partner, Eliza Iozzo, is affected by Niemann-Pick Disease Type A.
Michelle has been running dogs for 12 years and has completed five Yukon Quests, finishing 8th twice, 6th in 2007, 4th in 2008 and 5th in 2009. In March 2010 she completed her first Iditarod finishing 27th out of a very strong field.
When they are not racing, Michelle and her family operate Pristine Wilderness Tours in the Yukon Territories. Visit their Web site at www.yukonhuskies.com to read more about Michelle and her dogs and for more information about the preparation for these incredible races. The site's home page currently features a darling photo of little Lily and a special message from her grandma, Kathy.
Thank you very "MUSH," Michelle, for your support of those affected by NPD!
[Jan 11, 2011 mem]
Scentsy Wickless Candles Fundraiser
Edmonton, Alberta, Canada
|
|
|
Damon Cardinal (NPA)
12/26/06 - 4/16/08 |
Scentsy Fundraiser Display |
Escential Consultant Janna Henke continues raising funds for CCNNPDF with a "Scentsy Fundraiser for Niemann-Pick Disease Research," in memory of Damon Cardinal, son of Elsa and Delainy Cardinal of Edmonton, Alberta, Canada.
Scentsy offers unique wickless candles and specially designed ceramic warmers, using the heat of a light bulb rather than an open flame, to slowly melt the wax and release aromatic scents.
This fundraiser has raised well over $300 to date, and will continue until the merchandise donated by Janna and another consultant is all sold. Thank you, Janna!
[Feb 9, 2011 mem]
Wine Tasting Fundraiser for NNPDF
Saturday, February 26, 2011
4:00 - 6:00 p.m.
Watertown, New York
| Collin and Cohen Parody |
A wine tasting and hors d'oeuvres fundraiser will be held on Saturday, February 26, at Ives Hill Country Club, Watertown, New York. The event will go from 4:00 until 6:00 p.m., with proceeds benefiting the NNNPDF. Music will be provided by Mark Chauvette.
This event is being held in honor of Collin and Cohen Parody, children of Justin and Denesha Parody, and grandsons of NNPDF Board Member Kathy Lane. Collin and Cohen are both affected by Niemann-Pick Disease Type B.
Tickets are $50 each, and can be purchased by contacting Kathy Lane . Here is a flyer for the event.
Photo above donated by Photographs by Angela. Wine donated by Arsenal Wine and Liquor.
[Feb 2, 2011 mem]
Walkathon in Memory of "Little Roy" Teller (NPC)
Saturday, February 26, 2011
9:00 a.m. - 2:00 p.m.
Chula Vista, California
February 26, 2011, would have been Little Roy's 21st birthday. In honor of this milestone birthday and in memory of Little Roy, a walkathon fundraiser is being held to support NNPDF and the Quest for a Cure for Niemann-Pick Disease.
The walkathon will be held at Montevalle Park, 840 Duncan Ranch Road, Chula Vista, California, from 9:00 a.m. until 2:00 p.m.
Registration is $21 per family. Please email Brenda for registration information.
[Jan 24, 2011 mem]
Bethlehem Brew Works to Benefit Race for Adam
January 6, 2011
5:00 p.m.
Bethlehem, Pennsylvania
| Adam Recke (NPC) |
On Thursday, January 6th, beginning at 5:00 p.m., Bethlehem Brew Works will offer a hand-pumped, cask-conditioned ale as a special, one-of-a-kind connoisseur's treat, with proceeds to be donated to the Race for Adam Foundation in honor of Adam Recke (NPC). The ale will be available only until the 10-gallon barrel runs dry. There will also be a silent auction of Penn State memorabilia and T-shirts available for purchase.
[Dec 9, 2010 mem]
To read about fundraising events during 2007 and 2008, visit
this page
.
To read about fundraising events during 2009 and 2010, visit
this page
.
[Jan 24, 2011 mem]