Recent Events
Hosted on Behalf of the NNPDF and our Families (2011- 2012)
Upcoming Events 2009 and 2010 Events 2008 and Earlier Events
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.
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| 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
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| Dillon Papier (NPC) |
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
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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]
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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
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| 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
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| 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]
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Fishing for Charities Tournament to Benefit NNPDF |
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The boat of Fishing for Charities' founder and president |
Fishing for Charities Team with Raiden Linkous (NPC) center front, and dad, Dwayne, directly behind him. |
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
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| 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 pickzoe@hotmail.com.
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
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| 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
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| 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
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| 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!
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[Dec 14, 2011 mem]
Mohegan School
Shelton, Connecticut
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| 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
Naperville, Illinois
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| 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]
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"We have accepted the NNPDF's 11-11-11 Challenge!" Update: The 11-11-11 Challenge raised over $20,000 for Niemann-Pick Disease research! Many thanks to all who took the Challenge and all who so generously donated toward our Quest for a Cure! |
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
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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] |
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Vegas Casino Night in Kansas City
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[Oct 11, 2011 mem; Dec 5, 2011 mem]
Saturday, October 29
11 a.m. - 4 p.m.
Simi Valley, California
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| 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; Dec 5, 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
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| 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; Dec 5, 2011 mem]
5th Annual Walk-a-Thon
Woodville, Alabama
Saturday, October 22, 2011
9:00 a.m.
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| 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.
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| "Elvis" (aka Ty Quandt) enjoyed "Blue Hawaii" with Junior High 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
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| 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
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| "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
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| 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
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| 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
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| 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
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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
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| 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
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| 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
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| 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
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| 2011 Frederick Keys Benefit for NNPDF in Honor of Dillon Papier | |
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]
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2nd Annual Zoe's Fun Run
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| 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
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| 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
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| 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
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| 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
Saturday, July 23, 2011
Registration 9:30 a.m.
Woodville, Alabama
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| 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
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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
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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 |
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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
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| 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
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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
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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
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| 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]
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Flameless Candles and Jewelry Fundraiser Benefits NNPDF
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| 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
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| 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.
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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
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| 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]
4th Annual Memorial Day Bake Sale
Frederick, Maryland
May 2011
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| Dillon, surrounded by his dear friends who bake in support of the NNPDF! |
Friends of Dillon Papier (NPC) have been holding an annual bake sale to raise funds for the NNPDF in his honor for the past four years. Lots of yummy treats and fun with the girls! What a great way to bring in the summer!
[Dec 14, 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.
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| Dwayne Linkous' boat -- in honor of his son, Raiden. How COOL is THAT?! | |
[Nov 30, 2010 mem]
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Steelhawks Sponsor "Race for Adam" Night |
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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
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| 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]
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| 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
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| 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.
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| 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
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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 info@hadleyhope.com 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
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| 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
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| 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
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| 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.
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| 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 Gala
Saturday, March 5th, 2011
Riviera Parque Dining, Banquet & Convention Centre
Vaughan, Ontario Canada
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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. |
Musher Raising Awareness of Niemann-Pick Disease
Yukon Quest Feb. 5 and Iditarod March 5, 2011
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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
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| 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
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| 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
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| Adam Recke (NPC) |
[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]