Events Hosted on Behalf of the NNPDF and our Families - 2008 and prior
Upcoming Events 2011 Events 2009 and 2010 Events
Damon Cardinal Memorial Birthday Celebration
December 26, 2008
Damon Cardinal (NPA) would have been two years old on December 26. Damon's family held a birthday celebration in his memory, with donations going to the Canadian Chapter of the NNPDF, and gifts going to children at the hospital.
[Jan 2, 2009 mem]
Naach for Niemann-Pick Event Raises Funds and Awareness
A special gathering and dance was held in honor of Aaditya Ravi Dasgupta (NPC) and all those affected by Niemann-Pick Disease this past summer. Naach for Niemann-Pick featured the music, dance, and dress of many regions of India. The event is included in a recent documentary titled, "Our Indian Story." For more information about this successful event and the documentary, click here.
[Dec 29, 2008 mem]
Race for Ty
Triathlete Jennifer Block with Ty and Karen Quandt
Karen Quandt, mom to Ty (NPC ~ age 12), sent along a link to a YouTube video that was created to help generate support for Jennifer Block in her quest to race in the Ironman World Triathlon Championship on behalf of Ty and allfamilies of the NNPDF.
Check out this link for their inspirational video: http://www.race4ty.com/category/pictures/Additional information can be found at: www.race4ty.com that highlights the overall story of this event.HUGE THANKS to Jennifer for her compassion and strength to take on this challenge, as well as to Ty and all thechildren/young adults of the NNPDF for being her source of inspiration!
[Dec 19, 2008 mem]
Friscos Restaurant Fundraiser in Conjunction with 2008 October Awareness Month
In honor of Dillon Papier and NPD October Awareness Month, the employees at Friscos Restaurant in Frederick, Maryland made a group donation and also set out donation canisters. Customers dropped in spare change and bills totalling almost $600 in donations! Thank you, Friscos, for your support of the Papier family and the NNPDF!
Dillon Papier (NPC) and his Grandma
[Dec 9, 2008]
Thank You to these families who participated in the 2008 National
Niemann-Pick Disease October Awareness Family and Friends Mailing!
| Genesis and Jennifer Sumbad Modesto, CA, USA In honor of their daughter, Katlyn Sumbad, age 2 years (NPB)  |
Delaney Cardinal and Elsa Hudson Edmonton, Alberta, CA In memory of their son, Damon Cardinal (NPA) 12/26/06 - 4/16/08  |
|
| Jessica Cisneros Yuma, AZ, USA In memory of her daughter, Malayna Varela (NPAB) 5/31/01 - 7/22/07  |
Russell and April VanDyke Ken and Misty Bachman Kings Mountain, NC, USA In memory of their daughter, Zoe Bachman (NPA) 12/19/03 - 6/9/06  |
|
| Allen and Ronda Fagan Jackson, MI, USA In honor of their daughter, Malinda (Mindy) Fagan, age 9 years (NPC)  |
Juanita and Raymond Sims Geneva, NY, USA In honor of their daughter, Ashley Sims, age 18 years, (NPC)  |
Elsa Hudson appeared on the tv news October 16, the six-month anniversary of the death of her son, Damon Cardinal, speaking about Niemann-Pick Disease and its effects on a family. Visit Global TV's Health Matters page to see the story. Click the dropdown arrow in the blue bar titled Health Matters and then search "Niemann-Pick" (with the hyphen and without the quotation marks). Great job, Elsa, getting the word out about NPD!
[Oct 2008 mem]
Werribee Primary School (Australia) Remembers Mitchell Harrower
We received the following note from Werribee Primary School 4th-grader Taylor Harrower, together with a generous donation in memory of her brother, Mitchell, who passed away in August at the age of 7-and-a-half years from the effects of Niemann-Pick Type C.
In the words of Taylor, age 9:
"Hi -- my name is Taylor and my little brother died not long ago and he had Niemann-Pick. I have also raised some money for you in grade 2 and now the school I go to has had an out-of-uniform day for your research. Please do good with the money and thank you.
Kind regards,
Taylor Harrower
Mitchell and Taylor Harrower
Thank you, Taylor, and all the Werribee Primary School
Students and Teachers!
Your donation will help in our fight to save
other children like MItchell.
[Dec 4, 2008]
Cycle for Sam
Ride Across South Australia
Sam Roberts (NPC)
6/30/00 - 4/19/05
The second Cycle 4 Sam event was held during Niemann-Pick Awareness Month, October 2008, in memory of Sam Roberts, the son of Martin and Michelle Roberts. Sam passed away in 2005, just short of his fifth birthday, from the effects of Niemann-Pick Type C.
Marty Roberts wrote about the event:
As you are probably aware in October the 2nd Cycle 4 Sam event was held in memory of our son, Sam Roberts, who passed away in 2005 from Niemann-Pick Disease Type C. A large support crew of family and friends assisted us in this endeavor.
A team of 12 friends/ family rode 1150km across South Australia in 8 days, climbing 9500m along the way. Our aim was to raise $60,000 for Paediatric Palliative Care at the hospital which cared for Sam, the Adelaide Women's and Children's Hospital.
Some footage of our ride can now be seen on You tube (see link below). The footage is part of a documentary being produced on Sam's story, Cycle 4 Sam, and the Sam Roberts Family Fund.
http://au.youtube.com/watch?v=Sct2oVUXp84
Hope you enjoy!
kind regards, best wishes,
Marty
Visit www.cycle4sam.com for more information.
[Dec 3, 2008]
Dillon's Day at Foster's Grille and Subway
Frederick, Maryland
The first Monday of each month, Foster’s Grille donates 25% of all sales proceeds to the National Niemann-Pick Disease Foundation. Further, Foster’s matches any amount raised!
Dillon's Day at Foster's Grille
On Dillon's Day, Subway donated 50% of its proceeds!
Dillon and the Subway Crew
[Nov 20, 2008]
Goals for Naomi
Sunday, November 2, 2008
4:00 p.m.
Shelton High School Turf Field
Naomi Tyrrell (NPC) age 6
Shelton Varsity Boys Soccer Team vs. MLS Coaches
2nd Annual
Shoot Out!
How good is your shot? Test your skills against Shelton's
finest Keepers and the MLS Keepers!
Tickets: Adults -$5 in advance; $6 at the gate Students
- $3 in advance; $4 at the gate
Shoot Out: $5 for 5 shots
Raffles, Music and FUN!
Wear your favorite MLS jersey and be entered into a raffle for tickets to a New England Revolution Game!
This is a benefit for the Niemann-Pick Foundation on behalf
of Naomi Tyrrell.
Help us aid in finding a cure to this disease and
preserve a child's most precious gift....LIFE.
Goals for Naomi is an annual fundraiser and awareness event organized by Jessica, a teenage friend of the Tyrrell family, begun as a confirmation project for church. Jessica recruited her friends to help, and her proud mom reports, "They have all demonstrated a great amount of character, compassion and selflessness....These kids are awesome!" Thank you, Jessica and friends, for your support of Naomi, the Tyrrell family, and the NNPDF!
[Nov 3, 2008]
1st Annual Kevin Eadie Charity Golf Tournament
Saturday, November 1, 2008
Fords Colony Golf Course
Williamsburg, VA
To benefit the Kevin Eadie Foundation
Registration and Check-in
8:30 - 9:00 a.m.
Shotgun Start 9:30 a.m.
Boxed Lunch & Goody Bag for each player!
Mulligans for sale, contests,
and prizes!
Celebrity Guest - Ryan Zimmerman of the Washington Nationals
(Kevin
served as Ryan's batboy before Ryan went to the MLB)
For more details about the event, including entry information
and how you can help sponsor this event, click here.
The
local tv station plans to do a story during October about Kevin, NPD, and
the golf tournament.
Visit Kevin's website at www.helpkevin.org to
learn more about Kevin and Niemann-Pick Type C
[Oct 10, 2008]
Kathy Lane of New York has been busy organizing fundraisers on behalf of NNPDF and research in honor of her grandsons, Collin and Cohen (NPB). She put together a basket of items and sold raffle tickets for it, placed donation canisters around her town, sold wristbands at a football game, and has been gathering donations of items to sell at a craft fair. Thank you, Kathy!
[Oct 30, 2008]
Gabrielle's Gift Yard Sale
Saturday, October 25, 2008
Gabrielle's Gift (Florida) held a yard sale on October 25 to support Gabrielle LaVerde (NPC) and the NNPDF. NPC brochures were handed out and NPD awareness items were made available for purchase. The garage full of items were all donated by family and friends for the event.
[Oct 27, 2008]
Race 4 Ty
Ironman World Triathlon Championship
Saturday, October 11, 2008
Kona, Hawaii
Featuring Athlete Extraordinaire
~ Jennifer Block ~
Ironwoman Jennifer Block raced or the NNPDF on Saturday, October 11th, in Hawaii! It was an 11 hour race (Swim 2.4 miles, Bike 112 miles and Run 26.2 miles)! See www.ironman.com for detailed results of the event.
Jennifer wore the NNPDF rainbow swoosh on her racing shirt!
[Oct. 14, 2008]
Cruise for Adam -- Benefit Car Cruise
All Car Makes & Models
Welcome
Sunday, October 12, 2008
12:00 - 4:00 p.m. (rain or shine)
Farmersville Elementary School
7036 William Penn Hwy
Easton, PA 18045
The Easton Area Corvette Club, in conjunction with the Farmersville Elementary School, hosted a Benefit Car Cruise. Corvettes and other makes and models were on display to view and enjoy.
Cruise for Adam Poster and Information Page
Adam Recke (NPC)
[Oct. 14, 2008]
Third Annual Golf for a Cure
Link to news coverage following the event: WFMZ
TV Online
Sponsored by PSEA Eastern Region
Sunday, October 5, 2008
Registration at 12:00 p.m. 1:00
p.m. Start
Southmoore Golf Club
235 Moorestown Dr. (Rt. 512)
Bath, PA 18014
Help fund research for a cure for Niemann-Pick Disease
All
proceeds will benefit the National Niemann-Pick Disease Foundation and
Ara Parseghian Medical Research
Hole Sponsorships and Raffle/Awards Sponsors
Adam Recke - age 9 (NPC)
The family of Adam Recke had a busy weekend with a golf outing to benefit NPD research and the NNPDF. See above for a link to tv news coverage of the event.
[Oct. 7, 2008]
Family/Friends Fundraiser Picnic
Saturday, October 4, 2008
11 a.m. - 6:30 p.m.
Hop Brook Lake Park - West Lawn Shelter Pavilion
Route 63
Naugatuck, CT
Come free -- bring your own picnic foods. Grills will be provided. $1 ticket chance raffle baskets, children's games, music by folksinger/guitarist Kristen Graves from 5:00 - 6:30 p.m. General donation box for NNPDF at picnic site. Please join us!
Contact: Judy Desouza at Judy.Desouza@BICworld.com .
Bryanna Desouza (NPC)
1/20/1992 - 12/5/2006
Judy Desouza was joined by family and friends at a park overlooking a small lake for a family day picnic celebration in memory of Bryanna and in support of NPD October Awareness month. Families brought dishes to pass, were able to purchase raffle tickets for a chance to win one of 11 baskets filled with a variety of goodies. A "Tastefully Simple" display was on hand with a donation made to the NNPDF for each order placed. Information about the NNPDF and research updates was available for attendees.
[Oct. 7, 2008]
Katlyn Sumbad Golf Tournament
for the National Niemann-Pick
Disease Foundation
Saturday, October 4, 2008
Creekside Golf Club
Modesto, California
9:00 am First Tee Time
The event is a 4-person scramble with the first tee time at 9:00 a.m. There will be a raffle, silent auction, contests and prizes. The entry fee is $100 per person and includes: green fees, cart, lunch, and range balls. To participate or donate, please contact Rick or Cindy Pruneau at cmpjune@aol.com.
Katlyn Sumbad - age 2 (NPB)
The 2nd annual golf tournament to benefit NPD Research and the NNPDF was a great outing and those in attendance enjoyed a day of fun, sunshine, great food, and some super golf. A raffle, silent auction, prize holes, and numerous contests rounded out the day. Unfortunately, little Katlyn became ill and was unable to attend as the Guest of Honor. The Sumbad family has requested that we all keep Katlyn in our hearts and prayers.
[Oct. 7, 2008]
10th Annual Fight For Jessica Fundraiser
“A Decade
of Devotion”
Saturday, September 27, 2008
Manhattan Beach Marriott
Silent Auction starts at 6:30 PM
[July 29, 2008]
Hunter's Hope Memorial Golf Tournament & Auction
Friday, September 19, 2008
Hanging Rock Golf Club
Salem, Virginia
1:00 pm Shotgun Start
Set aside this date for Hunter's Hope Memorial Golf Tournament & Auction, a benefit for the National Niemann-Pick Disease Foundation. It's a 1:00 p.m. tee off at Hanging Rock Golf Club in Salem, VA. The live auction will begin at 6:30 p.m. To sponsor, participate or to make a tax deductible donation call 540-774-0944, email ozmer@verizon.net, or visit www.huntershopememorial.com. Hunter Ozmer was a courageous young woman whose magical smile touched many lives. Please support this event to keep her spirit alive and to research a cure for Niemann-Pick Disease.
Brochure and registration information.
[Sept. 22, 2008]
Second Annual Dillon Papier Charity Golf Tournament
Friday, September 5, 2008
Hollow Creek Golf Course
Middletown, MD
The day's events were nothing short of spectacular!
Thanks to you, after the final count, the Second Annual Dillon Papier Charity Golf Tournament raised over $67,000! The Papier family extends their heartfelt appreciation to all the volunteers, golfers and sponsors who were so generous with their time and donations.
Planning for next year's event is underway. For more information please contact Michael Hayden at 240-463-0928 or email at mbh512@comcast.net.
[September 8, 2008]
Tomorrow's Hope Walk Fest
"Because I Love You"
August 22-23 , 2008
Jefferson High School
Jefferson, WI
In honor of all members of the NNPDF.
To join a team or for more information visit the web site at www.tomorrowshope.org.
[July 18, 2008]
Fourth Annual "Nate's Promise For A Cure" Golf Tournament
Friday, July 25th, 2008
Saddleback Golf Club
Firestone, CO
Registration: 11:30 am
Shotgun Start: 1:00 pm
Awards and Dinner to Follow
Nate and his family need your continued support.
For more information on how to register, visit www.natespromiseforacure.com.
[April 29, 2008]
Frederick Keys Benefit for Dillon Papier
When: Sunday, July 13, 2008 at 6:00 p.m.
Where: From Washington, DC: I-270 North to Frederick, MD. Exit 32 - Route
70 East to Baltimore. Exit 54 from Route 70 East. Turn right at second
light onto Market Street Take second left onto Stadium Drive Parking
lot and stadium's main gates are on your left.
Frederick Keys web site: http://www.frederickkeys.com
Tickets: Darlene Gelsleichter 301-874-1084 hdr123@comcast.net; Gary Irwin 240-876-1491 garwillwin@comcast.net or Darrile Papier at 301-529-1620 papierfamily@gmail.com.
Click the following to view the flyer for the event: Flyer for Dillon Frederick Key 7/13/08
[April 29, 2008]
**WISCONSIN EVENT ~ FLOODING UPDATE**
Stacey Memorial Classic Silent Auction
Featuring the Band "Hat
Trick"
JUNE 28, 2008
2:00pm ~ 5:00pm
Spring Creek Golf Center
Cold Spring, WI
A few raindrops (ok ~ more than a few) and record flooding isn't enough to stop the Vorpahl family from hosting their annual memorial fund raising event in support of the National Niemann-Pick Disease Foundation and in memory of their daughter, Stacey.
In fact, discussions surrounding utilizing the golf venue to its fullest "most recent" weather upgraded capabilities brought about the suggestion of a swim meet in place of the golf classic.........
......Swimming not up your alley?
Well, how about a fabulous
music venue and silent auction in a beautiful countryside setting with
family and friends?
Please join the Vorpahl family and friends to celebrate
the
Stacey Memorial Classic Silent Auction
Featuring the local band sensation
"Hat Trick"!!
Stop by Spring Creek Golf Center this Saturday (06/28/08)
from 2:00pm ~ 5:00pm
Enjoy the band and place a bid on a wide selection
of silent auction items!
Stacey Classic Silent Auction Items ~ 2008
If interested in an item and you can not attend the event
you are welcome to place a "SEALED BID".
For a sealed bid please
send the amount you would be willing to pay for an item on the list to bvorpahl@charter.net by
June 28th. Your bid will be place in a sealed envelope
and opened when the bidding is done.
If your bid is the highest you will
receive the item for the amount you bid.
All proceeds will be donated to the National Niemann-Pick Disease Foundation to fund research. Special Silent Auction featuring unique sports memorabilia, great ticket packages, vacation get-a-ways, and much, much, more. Everyone is welcome to come in, view or place a bid. Bidding will close at approximately 4:30 p.m.
Please join us for this special event in memory of Stacey Vorpahl, a 19-year-old Fort Atkinson girl, who died after a courageous battle with Niemann-Pick Type C Disease. Stacey touched many people in her short life, motivating her parents to join with others to establish the National Niemann-Pick Disease Foundation bringing together families around the world suffering from this rare disorder, offering hope for a cure.
~ New Flood Directions ~
Highway N is underwater.
The best way to get to the Golf course (if you don’t own a boat) is take highway 26 to Hwy 12 through Fort (as if going to Whitewater) two miles out of town take Carnes road left and follow all the way East until the road ends. (You will see the club house at a distance a little to the left ahead of you). Take a left on N and the first right which is the road to
Spring Creek Golf Course
[June 23, 2008]
Erin Roberts Memorial
Hanover 5-K Road Race & Walk
JUNE 28, 2008
9:00 a.m.
St. Mary's Church
Route 139
Hanover, Mass.
The finish line will be at Hanover Town Hall. There will be t-shirts for anyone pre-registered by June 5th but anyone can register on the day of the event. Entry fee is $15. Medals are awarded to the top three male and female finisher in each age group. To participate, fill out the Erin Roberts Race Form. For more information call 781-826-1300 or email bcassidy@heathtrax.net.
Read the article in the Patriot Ledger about this event.
[April 29, 2008]
Sunday, June 29th, 2008
1:00 - 5:00 pm Rain or Shine
Goss Field House, Chase Collegiate School
565 Chase Parkway, Waterbury,
CT
Event Schedule:
Registration: 1:00 - 2:00 pm
Opening Remarks: 2:00 - 2:30 pm
Walk/Post Walk Picnic: 2:30 - 5:00 pm
All participants receive a t-shirt and goody-bag, food and water is provided
for all walkers with prizes awarded to individual walker and team with
largest donations. There will be live entertainment during pre/post
walk times and a raffle for restaurant gift certificates and other prizes. All
proceeds will benefit the NNPDF. Please fill out the registration
form to sign up for this event. For more information please
contact Gianni Perugini (203)558-8769 or perugini17@sbcglobal.net.
[April 29, 2008]
Allee Kirby Memorial Golf Outing
JUNE 29, 2008
Eagle Pines Golf Course
Mooresville, Indiana
This golf event is sponsored by Lisa Kirby's brother and
the Texas Roadhouse Restaurant where he is a manager.
More details
to be announced.
[May 15, 2008]
6th Annual Alex and Laura Vaughan Memorial Golf Tournament
You helped us do it again!!!
Again, a huge THANK YOU to all of our family and friends and the fantastic businesses throughout Canada and the US that helped make our day the success that it was.
Your contribution gets us that much closer to finding a treatment and cure for Niemann-Pick Disease. As I said on Saturday, I can’t wait for the day that we are hosting the tournament to support research into another disease because we have found the cure for Niemann-Pick.
We definitely had some little angels watching over us to give us such beautiful weather instead of the thunderstorms that had been promised.
Please keep your calendars marked for June 20, 2009 for the 7th Annual Alex and Laura Vaughan Memorial Golf Tournament; See you then!!!
Tammy, Allan and Michael
JUNE 21, 2008
Stone Tree Golf Course
Owen Sound, Canada
2008 will mark the 16th anniversary since we lost our precious son Alex to Niemann-Pick Disease at the age of 4 years, 8 months and the 7th anniversary of the death of our sweet little princess Laura at the age of 6 years 10 months. As many of you know, we – Tammy, Allan and Michael – are dedicating our lives to helping other families that are dealing with Niemann-Pick Disease. It is our goal and dream to have no other family go through the life altering, devastating experience of losing their precious son or daughter, brother or sister. Through our efforts and the generous donations from the terrific businesses throughout Ontario and most importantly from you, our family and friends, we are making a difference. In the 5 years that we have held the tournament we are very proud to say that we have been able to contribute over $100,000 to research to find a treatment and cure for this life stealing disease.
Hundreds of thousands of dollars are spent each year for research on Niemann-Pick Disease. The current scientific environment of Niemann-Pick Disease has seen a change in emphasis from a basic research priority to one of translational research and emerging clinical research. In order to support these advances in research new tools are required; better animal models; international patient registries; natural history studies; newborn screening; carrier screening. That’s why your support is so vitally important to our fight!
Once again this year we are appealing to you, our friends and family, to support us in our fight. Attached you will find entry forms for the tournament if you would like to participate. We would also appreciate your support by sponsoring a hole, donating a prize for the raffle or making a monetary donation. Click here for a registration form.
For more information or to see pictures of last year's event, go to Canadian Fundraiser Events.
[April 29, 2008]
Frederick, Maryland
June 22, 2008
All day on Sunday, June 22nd, Subway, located in the Giant Shopping C, will donate 50% of its total sales proceeds to The National Niemann-Pick Disease Foundation. The NNPDF, a national 501(3)(3) non-profit, which works to support the vital, potentially life-saving research that keeps hope alive for families living with Niemann-Pick Disease.
Families just like our neighbors, the Papiers.
Whether your plans take you to the pool, a hike, the big game, or a family picnic - plan to take Subway along. Every Subway purchase on June 22nd will add to the research dollars so desperately needed. Also, look for the “Dillon’s Donations” jar coming soon to the Urbana Subway as well as other local Subway locations.
[May 27, 2008]
2008 Lee King Benefit Bass Tournament
Saturday, June 14,
2008
Lakepoint State Park - Lake Eufaula
Eufaula, Alabama
**UPDATE**
Melissa and Jimmy King held their 8th Annual Lee King Buddy Benefit Fishing
Tournament in Eufaula, Alabama this past weekend in honor of their son,
Lee (NPC) age 16. Melissa, Jimmy and, event coordinator, Sam Williams,
noted that the event was a huge success for their family, community and "anglers" alike. Let's
just say that there was quite a bit of "fishy business" taking
place in Eufaula. Listed below is a newspaper article highlighting
the weekend events!
http://www.eufaulatribune.com/euf/sports/local/article/tourney_sets_new_records/20556/
Congrats and many thanks to Lee, his family, Sam and their community volunteers
for their continued efforts on behalf of raising awareness into NPD and
funds for NPD research.
Team Entry Fee - $110 + $5.50 Credit Card Fee =$115.50
Fee Includes Big Fish
To enter online click here or for more information visit www.leekingbenefit.org.
[April 29, 2008]
5K Race/Walk for a Cure
In honor of Adam Recke
JUNE 14, 2008, 10:00 a.m.
Lehigh Parkway
Allentown,
PA
**UPDATE**
Approximately 800 people supported the third annual 5K Run/Walk for a Cure. The race, which is held each year in scenic Lehigh Parkway, brings together those who want to race and those who love Adam Recke. Many of the walkers and runners are Adam's family and friends within the Salisbury Township School District and Bethlehem area School District. This year's T-shirt color was chosen by Adam. The creative design read, "We walk today, to find a cure for tomorrow!" As 10 a.m. approached on June 14, a beautifully large orange crowd gathered around center stage where Sean Recke and his son, Adam as well as Race for Adam Foundation President, Matt Tobias welcomed everyone.
"The support from friends, neighbors, and businesses in our community as well as throughout the United States has really helped the Recke family through their daily struggles," remarked Tobias.
At this early point in Tobias' welcoming speech, he became very emotional as he explained to the excited crowd that there was an overwhelming surprise for the Recke family. The Spina family, formally of Bear Sterns, had a special check. Tobias continued, "They say it takes a village to raise a child. We are fortunate to have such a village in the people whose lives Adam has touched while facing such adversity. The village is here, it's all of you. Some members of our village, the former partners of Bear Sterns, no stranger to adversity themselves, are here with a very special gift."
Dan and Carol Spina entered the stage with an oversized check for $50,000. This sum is the single largest donation received by the Race for Adam Foundation. A tearful Tobias concluded, "This donation reminds us that together, every person, every village... can make a difference in the life of a child."
For more information on this wonderful event, please visit www.raceforadam.org.
The 2008 Race has been scheduled for June 14, 2008 at 10:00 AM at the beautiful Lehigh Parkway. There will be the following at the event: 5K Competitive Run, 3K or 5K Fun Walk, Basket Raffle, Live Music by Vinyl Diner, Children's entertainment, and free food and beverages.
To enter the race or for more information visit the website at www.raceforadam.com.
[April 29, 2008]
Evening of Hope
In honor of Peyton and Kayla Hadley
JUNE 14, 2008, 6:00 p.m.
Bigham Knoll
525 East E Street
Jacksonville, OR
Come and enjoy a fun-filled evening with friend’s and family to raise treatment funds for the Hadley children at Bigham Knoll in Jacksonville, formerly Cascade Christian High School. The “International Food” event will begin at 6:00 p.m., and will include raffle items, live entertainment, a silent auction, and hors d’oeuvers and desserts from six different countries. Tickets are $75 each. To purchase tickets prior to the event, contact Carrie Smith at 541-951-2959 or carriesmi@charter.net. To donate to the silent auction goods/services, contact Danielle Wheeler at wheels.or@juno.com.
For more information or to visit the family website go to www.hadleyhope.com.
[May 15, 2008]
Tastefully Simple Fundraiser in Memory of Bryanna Desouza
June 1st - June 15th, 2008
Hi families,
I just wanted to mention I will be starting a new fundraiser in memory of my Bryanna and in honor of our NNPDF children and families for the period of June 1st - June 15th. It is an "online catalog party" for Tastefully Simple Products. I have attended a party in person and the products are easy mixes that just need 1 or 2 ingredients added. Example - Beer Bread mixes, garlic and onion and other seasonings, muffin mixes, dip mixes, and more. The consultant and company will give me 20% total less the small credit card processing fees for all sales between June 1st - June 15th under the special link that they have set up for me. I am now adding people to invite on my link. If anyone would like to be invited to this on line catalog party (NO Obligation to buy, but can look to see if you are interested in purchasing), I will add your names to my list in the link for this fundraiser. Anyone in the USA can be included since their shipping is domestically only. If you would like to check out the web site on www.Tastefullysimple.com for a preview of their products and recipe ideas, please do.
Anyone interested in being invited (even if you do not end up ordering), please email back to me at
Judy.Desouza@BICworld.com or email the following information to the listserv: Your first and last name and your email address. I will send out the invitation electronically on May 30th. Thanks for your help!I already have about 40 people and still adding.
Judy Desouza
mom of Bryanna (1-20-92 to 12-05-06)
Connecticut
[April 29, 2008]
Ducks For Bucks
In memory of Breann Chavez
June 7, 2008, 12 - 6 p.m.
Wines of San Juan Winery
Turley,
New Mexico
*UPDATE*
Wow, what a weekend. We are just know recovering. We were so blessed to have family come in from California, Nevada, New Mexico, and even Pennsylvania!
The day had a really slow start. The electricity kept going out in the whole valley, so the band wasn't able to start on time, the bounce's were down, our food needed electricity, and the whole place runs off of an electric pump, so there was no water. AH! Finally it came back on, only to go off again in the middle of our $2000 band! It stayed off the rest of the afternoon, but by then we had generators in place and could keep things moving. Needless to say, I was a little stressed for the first part of the day and I was sure we wouldn't do as well as last year.
But, I was worrying for nothing. The silent auction finally started moving and in the end we sold more than last year. We ended up selling 1302 ducks, 302 more than last year and at the end of the day. We had the same amount of people, it was just more of a come and go all day crowd, compared to last year when it seemed everyone was there at the start of the day. God, is certainly good in the mist of it all, isn't He?
Our feel good story of the day came at the end of the duck race. Breann has three little cousins who remember her and loved her very much, Malachi - age 11, Markus - age 9, and Carlos - age 7. They had been playing with all the different ducks all weekend and picking out their favorite (they are all different, baseball duck, army duck, beach duck, act.) They all bought their ducks and decided if any of them won, they would all split the money. (First place duck was $1000.00 cash) They were going to do $250 to each of them and give $250 back to Ducks for Bucks.
Well, wouldn't you know Malachi's duck won first place! And he and Markus decided they should give all the money back. The funny part was the youngest, Carlos was not so convinced that was a good idea. His brother told him "Carlos, we have everything we need and these kids need help." He quickly changed his mind and they gave it all back. Family was all telling them to keep it, but they wanted to give it back and we were all so proud of them. Jami and I were especially touched. What a great family we have. It is good for all of us to honor Breann with such a special day during this time. The next day was 2 years that we lost Breann. The boys decided to
pick a duck out for Breann to represent each year. They picked out an angel duck for last year and a kitty duck for this year and put it up at her headstone, very touching again, they really loved her.
So any that was our day. Thanks for thinking of us and all your support. We are all so blessed to have the support of the foundation in each one of our fundraisers.
We would all be so lost without NNPDF helping us to PERSERVERE!
Lisa
Family Fun Day, Games and Prizes, Raffles and Auction,
Live Music and Food
Plus the Dainty Duck Dash$5.00 per duck/ 1st place wins
$1,000
For more information contact Lisa at 632-7649 or Alex at
632-0879
[May 13, 2008]
*** UPDATE ***
1st Annual Ryan Richardson Memorial Ride/Poker Run
May 31, 2008
Crestview, Florida
The ride was held on Saturday and was a success! The following is a link to a newspaper article written about the event. http://www.srpressgazette.com/sports/ride_3879___article.html/ryan_ended.html
For a picture slideshow of the event visit www.myspace.com/foreverryan.
The family of Ryan Richardson are hosting their 1st Annual Event in his memory benefiting the National Niemann-Pick Disease Foundation in Crestview, Fl. They will have a battle of the bands, food, auctions and lots of fun. If you are in the area please come.
*** UPDATE ***
Hello my NPD Family:
Tomorrow, (May 27th) will be Ryan's birthday, it will be a tough day. Our family will hoist balloons with messages of love to him. I have dedicated my (myspace page) for him if anyone would like to see a wonderful little man. The connection is www.myspace.com/foreverryan. Our Memorial Ride will be this coming weekend May 31st, pray for no rain.
We received our Proclamation from the Governor declaring National Niemann Pick Awareness Day May 31st in Florida. The Mayor will present the Proclamation to our family. The community has been wonderful and eager to learn about this disease and help.
Thinking of you all,
Sherry
[April 29, 2008]
"Benefit Quilt Show"
Tyler's Diner
May 2008
Elsie, Michigan
In May 2008, Tyler's Diner hosted a benefit quilt show and sold a bookcase from the diner to benefit the NNPDF. The owners of Tyler's Diner are the proud grandparents of Tyler(NPC), Kathryn(NPC), Faith(NPC), and Serina Heinze. At this benefit, they were able to raise $344 for the National Niemann-Pick Disease Foundation. Thank you to all who participated in this event!
[June 4, 2008]
"Life for Brooke" Spaghetti Dinner
May 18, 2008, 1:00 - 7:00 PM
St. Philip Neri Church
8200 N. 30th Street
Omaha, Nebraska
We are the parents of an adorable seven year old little girl named Brooke. Her life and ours was forever changed over five years ago, when she was diagnosed with Niemann-Pick Type C, a very rare genetic/metabolic disorder. This fatal disorder causes a build-up of cholesterol in the blood and brain which causes neurological developmental delays and eventually death.
On Sunday, May 18, 2008, we will be hosting a Spaghetti Dinner at St. Philip Neri Church. The cost of dinner is $8 per person, $15 per couple, and $5 for ages 10 and under. We are seeking sponsors for the event as well as donations for silent auctions. Sponsors may donate monies for supplies or may donate product or services. Any support will be greatly appreciated. We want your company to receive the justifiable appreciation and advertising it deserves. Your company name will be included on our display of thanks and included with any donated item or services.
Contact D.J. or Vicki Thomas with any questions at vickithomas@tconl.com.
[April 29, 2008]
Baysox Benefit for Dillon Papier
May 18, 2008, 2:05 PM
Prince George's Stadium
4101 N.E. Crain Highway (Route 301 South)
Bowie, Maryland
The proceeds will benefit Type C research for THE NATIONAL NIEMANN-PICK FOUNDATION.
For tickets contact Maris Walker at 301-464-8935 or 301-529-6481 or Marisw43@yahoo.com Tickets are $14.00 (50% Tax deductible)
Prince George's Stadium - 4101 N.E. Crain Highway (Route 301 South), Bowie, MD 20716
Baysox website: http://www.baysox.com
[April 29, 2008]
The Addi and Cassi Fund Presents:
Moonlight Garden Gala
May 10, 2008
Downtown Reno Ballroom
Please join us for a star-filled night to help find a cure to “Childhood Alzheimer’s” (Niemann-Pick Type C), a rare, progressive and fatal neurological disease that is robbing children of all ages around the world of their ability to walk, talk, or even remember the name of their favorite stuffed animal.
The Moonlight Garden Gala at the new downtown Reno Ballroom on Saturday, May 10, 2008 will be a mystical evening of hope, wonder and childhood dreams as we honor four-year-olds Addi and Cassi Hempel and children all over the world who suffer from “Childhood Alzheimer’s” (NP-C). Our guests will be treated to an elegant evening with a celebrity performance, silent and live auctions, uplifting music and an enchanting atmosphere as we transform the ballroom into a beautiful moonlit garden, designed in the spirit of a child’s imagination, with tree-lined paths, twinkle lights, fireflies and a fountain of wishes. This will be a very special evening where friends, family, honored guests and local dignitaries will have an opportunity to mingle, share ideas and help save children’s lives.
For more information visit www.addiandcassi.com.
Be Blessed - Melinda Doolittle - Cure Childhood Alzheimer's
[April 29, 2008]
Teeter-Totter Fundraiser
In Memory of Erin Roberts
Smithfield, Rhode Island
Ryan Kelly, proud alumni of Bryant University, member of Tau Epsilon Phi, and cousin to Erin Roberts (NPC) is proud to report that this annual event was held even after he graduated. This event took place April 30th - May 2nd continuing day and night. They were able to raise $200 through this event, and Ryan has been able to receive matching funds from his employer, GlaxoSmithKline. Thank you to these wonderful fraternity brothers to continue the fight for a cure of Niemann-Pick Disease.
[May 9, 2008]
"Dinner and a Show"
Elsie, MI
On March 29th, Tyler's Diner in Elsie, Michigan, held a benefit dinner and show for the National Niemann-Pick Disease Foundation. They enjoyed entertainer Scott Creswell of the OS Entertainment Company as he performed hits from Tim McGraw, Garth Brooks, and Jimmy Buffet. Baked chicken and BBQ ribs were served to those in attendance. Kathy Tyler, grandmother of Tyler, Kathryn, Faith and Serina Heinze, wrote that they had lots of volunteers and the evening went so well! The money raised for NNPDF was $1,685.00.
[April 30, 2008]
Coin Race, William's Birthday Party, and Wal-Mart
Support
Benefits Dillon Papier's "Fight For A Cure"
Kindercare-Westview Daycare Center held a coin race raising over $700!
In honor of William's 5th birthday, guests gave donations
to NNPDF totaling $1,075!
Dillon and his friend William are in the
center of the back row in picture on right.
Check from Wal-Mart to the National Niemann-Pick Disease
Foundation for $1,000 in honor of Dillon Papier.
Pictured in the center
with the Wal-Mart representatives are Mark and Darrile Papier holding Dillon.
[April 30, 2008]
Saturday Night Fever Disco Dance in Honor of Ty Quandt
**Update**
We are now all discoed out, we've had our "Saturday Night Fever" and we are "Stayin' Alive" with the Bee Gees! What a party! We had 123 items up for bid, a large number of people came to the auction and bid and danced and ate! A lot of people helped put it all together and worked the different areas, such as food and drinks and selling items. Our inspiration is Ty Quandt, fifth grade student at Mt. View Elementary School in Edgewood, WA. The kids from the school also worked and helped sell items at the dance, and their parents came and bid and bought auction items! The grand total was over $9,028.00 and still growing!!!
The volunteer crew led by Mrs. Kreuger and Cindy Bradeen went above and beyond! Mrs. Kreuger is already planning next year's auction, she has recruited workers from this year for next year and has announced the theme will be "Surfs Up"! Thanks to everyone for coming and bidding and we will see you in your swim gear next year!
Thanks,
Karen and all the Quandts
[April 14, 2008]
Karate Belt Pull in Honor of Adam Recke
On January 18th, the Champion Martial Arts Center of West Chester and Downington, Pennsylvania, held a Karate Belt Pull event to raise funds and awareness in honor of Adam Recke. This is a yearly event and in 2008 they raised $742 for the NNPDF. Thanks to Steve Johnson and everyone who supported this fundraiser!
[April 14, 2008]
Life for Luke ~ 7th Annual Gala
**Update**
Enio and Lucy Liegghio, along with their event committee, have forwarded
a copy of a presentation that was developed and made at their event earlier
this month. As noted previously, this years gala theme revolved
around the mystery of NPC research and accordingly puzzle pieces accompanied
this statement:
"YOU are the most important piece to the "Life for Luke Foundation".
Help us to solve the mystery of NPC one piece at a time..."
Check out the this link to view this inspirational presentation at: Life
for Luke Puzzle Presentation
[March 17, 2008]
Word has trickled down from our friends to the "north" (Canada
~ that is!!) that the 7th Annual Life for Luke Foundation Charity Dinner
Gala and Silent Auction was, yet again, another HUGE success.
Enio and Lucy Liegghio, along with their event committee, somehow manage
to pull together unique and successful events year after year. In reality,
we know that it is through countless hours of volunteer time, talent, sweat
equity and PERSEVERANCE.
This years gala theme revolved around the mystery of NPC research and accordingly
puzzle pieces accompanied this statement:
"YOU are the most important piece to the "Life for Luke Foundation".
Help us to solve the mystery of NPC one piece at a time..."
Check out the "Life for Luke Foundation" home page at: http://www.lifeforluke.com/gala2008.htm
This year, proceeds from their event are being sent to Sick Kids Foundation
of Toronto Canada and the Canadian Chapter of the NNPDF. Tammy Vaughan
and her family were able to attend the Gala on Saturday night and was "blown
away" by the number of attendees, as well as, the number of beautiful
and exquisite auction items and the unique take on the evening's meals
and entertainment.
The NNPDF would like to take a moment to add a note of thanks to the Liegghio
family and their supporters for the work that they are doing in memory
of Luke Daniel Liegghio (NPC: 05/05/97 ~ 06/10/05) and their continued
support of research into NPC.
Luke's Dad, Enio, penned this poem for his precious son which encompasses
so much for so many:
Do not cry for me as I am not here...
The sun is my smile,
The stars are my eyes,
The wind is my touch,
The rainbow is my endless love for you.
Words of thanks may be sent directly
to the Liegghio web site at: info@lifeforluke.com.
[March 4, 2008]
11th Annual Hunter's Hope Golf Tournament
To honor Hunter
Ozmer
September 14th,
2007
Hanging Rock Golf Club, Salem, VA.
Contributions to benefit NNPDF.
Learn more and register for this event (print and mail the attached form)
View the WDBJ Channel 7 program featuring Hunter Ozmer
First Annual Ryan Richardson Memorial Ride, September 2007
In
memory of Ryan Richardson
Crestview, FL
1st Annual Dillion Papier Charity Golf Tournament
September 17th, 2007, Frederick, MD
To honor Dillon Papier
Corvettes for Adam
October 21, 2007, Easton, PA
Golf Outing, hosted by Jennifer and Jensis Sumbad
September 8, 2007, Modesto, CA
To honor Katlyn Sumbad (NPB, age 1 year)
Proceeds to benefit NNPDF
Charlie Green of Elsie, Michigan will participate in the Wisconsin Ironman on September 9th, 2007 in Madison Wisconsin.
In memory of Tyler, and in honor of Katie and Faith Heinze (NPC).
Contributions to benefit NNPDF.
Learn more and support Charlie Green in the Wisconsin Ironman
Erin Roberts Memorial Hanover 5K Race and Fun Run
June 23rd, 2007
Hanover, MA
2007 Golf "Fore" Stacey Memorial Golf Classic, June 23rd, 2007
In memory of Stacey Lynn Vorpahl - A life that touched so many echoes still....
Ft. Atkinson, WI
Marcello and Matthew Perugini Memorial Walk
June 24th, 2007
Waterbury, CT
In memory of Marcello & Matthew Perugini
5th Annual Alex and Laura Vaughan Memorial Golf Tournament
June 16th, 2007
Owen Sound, Ontario, Canada
Tomorrow's Hope Walk Fest, Walking As One
June 15th &16th, 2007
Jefferson, WI
In honor of all members of NNPDF
visit: www.tomorrowshope.org/index.htm to learn more
Boat Raffle and Bass Tournament
The Lee King Buddy Benefit Fishing Tournament and Raffle will be held June 9th in Eufaula, AL.
Win a fully equipped Stratus 285 Pro XL bass boat
First Annual Breann Chavez Memorial Community Day, Farmington, NM
June 2nd, 2007
In memory of Breann Chavez
More Information (pdf)
2nd Annual 5K Run/Walk For A Cure, May 20th, 2007
In honor
of Adam Recke
Allentown, PA.
PBS 39 interview with Adam and his family
Second Annual Charity Golf Tournament
May 21st., 2007
Woodbridge Country Club, Woodbridge, CT
DiMatteo Family Charitable Foundation to honor all members of NNPD
Chasing Rainbows - A Walk Fest, Hattiesburg, MS
In honor
of Chase Jackson and Casey Kahl
Saturday, April 21, 2007
To benefit NNPDF
Read more from HattiesburgAmerican.com
Ty Quandt Family Community Dance
April 13th, 2007
Mt. View Elementary School
Edgewood, WA
In honor of Ty Quandt
Sixth Annual Life for Luke Dinner Gala and Silent Auction
3 March 2007
Participate in the Spare Change to Save Lives Campaign
Bryant University's (Rhode Island) ΤΕΦ fraternity
held a Teeter-Totter-A-Thon
in memory of Erin Roberts (NPC).
The event began on April 3rd and ended, in celebration of Erin's birthday, on April 5th. For 48 hours, there were 2 fraternity brothers constantly on the teeter totter, exposing the college students to this devastating disease and fundraising to support the work of NNPDF. We are grateful for the hard work and support of all the fraternity brothers.