Search
CaringBridgeGoodSearch

Events Hosted on Behalf of the NNPDF or CCNNPDF and our Families
2010 and 2009

Upcoming Events

2011 Events

2007 and 2008 Events

 October was Niemann-Pick Disease Awareness Month!
Visit October Activities for more info on all the awareness and fundraising activities in which our families participated!


Blair Vineyards Promotion to Benefit Race for Adam
December 17 - 24, 2010
Kutztown, Pennsylvania

Adam Recke
Adam Recke (NPC)

From December 17 through 24, the Race for Adam Foundation will be featured at Blair Vineyards.  During that week, 10% of the sales of Blair Vineyards'  2006 Merlot will be donated to Race for Adam in honor of Adam Recke (NPC).

Blair Vineyards is located at 99 Dietrich Valley Road, Kutztown, PA; telephone 610-683-8463.

[Dec 9, 2010 mem]


2nd Annual Ryan Richardson Memorial Scholarship Awarded

Kelly Yeakel Named Recipient

                                      scholarship recipient Kelly Yeakel and Sherry Richardson Ryan Richardson in fireman's helmet

Sherry Richardson (right) presenting the
2nd annual Ryan Richardson Scholarship award to Kelly Yeakel.

Ryan Richardson (NPC)
5/27/00 - 10/18/05

Nursing student Kelly Yeakel was recently named as the recipient of the 2nd Annual Ryan Richardson Scholarship award. Ryan Richardson, the son of Sherry and Christopher Richardson, passed away at the age of 5 from Niemann-Pick Disease Type C. Yeakel is a student at Walton Career Development in Defuniak Springs, Florida.

While taking care of her son through his illness, Sherry decided she wanted to be a nurse. Now as an LPN she is helping other nursing students by "paying it forward" in memory of their son Ryan.

[Dec 22, 2010 mem]


Harvest of Hope Dinner to Benefit Hadley Hope
Saturday, November 6, 2010
Jacksonville, Oregon

Peyton and Kayla Hadley

Peyton and Kayla Hadley (NPC)

Hadley Hope will hold its 3rd Annual Harvest of Hope dinner on Saturday, November 6.  The evening will include a buffet dinner, entertainment and an update on research into NPC. This year's event will be held in the ballroom at Bigham Knoll (formerly Cascade Christian High School) in Jacksonville, Oregon. 

For more information or to reserve a table, visit www.hadleyhope.com.

[Sept 17, 2010 mem]


Yankee Candle Fundraiser
October 21 - November 4, 2010
Naugatuck, Connecticut

Bryanna and Judy DeSouza

Bryanna DeSouza, NPC (1/20/92 - 12/5/06),
with her mom, Judy


This fall, Judy DeSouza will again host a Yankee Candle Fundraiser to benefit the NNPDF, with orders being taken from October 21st through November 4th.  Yankee Candles offer both new and traditional scents, thicker gift wrap and wonderful gift sets, priced nicely, with many items $10.00 and under!

This sale is held in memory of Judy's daughter, Bryanna DeSouza, who passed away from Niemann-Pick Disease Type C at the age of 15. 

Watch this space for more details as the sale dates draw nearer.

[June 11, 2010 mem]


Adam's Family Benefit Concert
Crocodile Rock Cafe
Allentown, Pennsylvania
Friday, October 29, 2010
6:00 p.m.

benefit flyer

The Crocodile Rock Café in Allentown is the place to be for the Adam's Family Benefit Concert on Friday, October 29, in honor of Adam Recke (NPC).   

This is an all ages show, and doors open at 6:00 p.m.  Bands playing will include Peripheral Vision, The Feens, Use Both Hands, Scott Marshall and the Hillbilly Souls, Island Time, Cloud Party, Revelation, Just Out of Reach, Stinking Gringoes, and Stasis. 

The evening will also feature a Halloween costume contest (costumes are optional).  Visit www.raceforadam.org for contest rules. 

Tickets to the event are $10 each, with T-shirts available for an additional $10.  For tickets, email info@raceforadam.org.   

Click here for the poster. 

[Sept 17, 2010 mem]


Mad Hatter's Tea Party
Family Dance Party/Fundraiser
Mt. View Elementary School
Edgewood, Washington
Friday, October 22, 2010
6:00 - 8:00 p.m.

Ty Quandt as the Mad Hatter
Ty Quandt, aka The Mad Hatter
A Mad Hatter's Tea Party will be held on October 22, at the Mt. View Elementary School in Edgewood, Washington. This family dance party will be a fundraiser to benefit the NNPDF in honor of Ty Quandt, who is affected by Niemann-Pick Disease Type C. 

Ty will celebrate his 14th birthday in October.  The party will include music, dancing, a raffle for un-birthday presents, a cupcake walk, photos at the tea party table and costumes.  There will be "eat me" cupcakes and "drink me" beverages for sale, along with bubble gum candy necklaces, root beer floats, nachos and assorted baked goods.

[Sept 14, 2010 mem]


Hair Cut-a-Thon
Friday, October 22, 2010
Dubuque, Iowa

Tylor White-Richardson and siblings
Tylor White-Richardson (NPC) surrounded by siblings.

Opalus Salon and Spa in Dubuque, Iowa, will hold a hair cut-a-thon to benefit the NNPDF in honor of Tylor White-Richardson on Friday, October 22. The cut-a-thon will run all day, from 9:00 a.m.until 6:00 p.m.

[Oct 12, 2010 mem]


October Awareness Talks
Mount Pleasant, Iowa

Danny and Lisa Clark
Danny Clark (NPC)
10/17/79 - 4/8/98
Lisa Clark (NPC)
9/30/82 - 12/12/02

Howard and Susie Clark of Mount Pleasant, Iowa, will be making two presentations to raise awareness of Niemann-Pick Disease during October Awareness Month.  Susie will first address her P.E.O. ladies group, and then the couple will be giving a talk to their Methodist Church group later in the month.

The Clarks lost both their children, Danny and Lisa, to Niemann-Pick Disease Type C.  The photo above is one of their mom's favorites, taken on a family outing to see a hockey game in 1997.  Susie writes about her children, " They were fabulous kids, and taught us so much about courage, strength, and acceptance."

[Sept 24, 2010 mem]


OrcaCellular's "Support the Cause" Promotion

Persevere Cell Phone Pouch

OrcaCellular of Medford, Oregon, works each October to raise awareness and funds for two causes --  breast cancer and Niemann-Pick Disease.  In honor of all families struggling with these two diseases, OrcaCellular will donate 100% of net profits on all "Pink" and "Persevere" cellphone pouches to each respective charity.

The Persevere pouches have the word "PERSEVERE," along with, "Blessed is the man who perseveres under trial" embossed.

NNPDF families who are holding fundraisers may contact Bryan Hadley at 800-992-5526 (www.orcacellular.com) regarding using the Persevere pouches as fundraising items. 

[Oct 11, 2010 mem]


Fundraiser in Memory of Tristian Norton-Rogers
Salem, South Dakota
Saturday, October 16, 2010
2:00 - 5:00 p.m.

Rogers Family
Tristian Norton-Rogers (NPA)
4/3/08 - 9/21/09
with his parents,
James & Sheila Rogers

Sheila and James Rogers of Salem, South Dakota, are organizing a fundraiser to benefit the NNPDF in memory of their son, Tristian Norton-Rogers.  The event will be held at the National Guard Armory in Salem on Saturday, October 16, from 2:00 until 5:00 p.m.  There will be inflatables for kids to play in, a cake walk, raffle baskets full of donated items, and more.

The governor of South Dakota is expected to sign a proclamation of October as Niemann-Pick Disease Awareness Month, as well.

Little Tristian passed away last September as a result of Niemann-Pick Disease Type A (ASMD).

[Sept 14, 2010 mem]


Awareness Video and Facebook Pages Mark October Awareness Month
Alberta, Canada

Damon Cardinal Tehyez Minde
Damon Cardinal (NPA)
12/26/06 - 4/16/08
Tehyez Minde (NPA)
Born 6/9/2008

NNPDF member families in Canada are busy making preparations for October Awareness Month, as well.  Elsa Cardinal, mom to Damon Cardinal (NPA), is preparing a video about Niemann-Pick Disease.  She will present the video, brochures and newsletters, along with her family's experience with NPD, to a class of which she is a member.  The video will also be posted to YouTube and Facebook.

Elsa, together with Tessa Minde, mom to Tehyez Minde (NPA), has created a Facebook page called "Our Quest to Raise Awareness for Niemann-Pick Disease," and  Elsa also maintains another Facebook page titled, "Damon's fight for a cure." 

Next time you are on Facebook, check out these pages put up by moms dedicated to raising awareness and funding for NPD research.  Their fervent hope and motivation is that someday, no family will have to face what their families are facing with Niemann-Pick Disease.

[Sept 24, 2010 mem]


Niemann-Pick Disease Type C Walk-a-Thon
Saturday, October 16, 2010
Woodville, Alabama

Riley Corbitt

Riley May Corbitt (NPC)
7/27/02 -10/29/08

The Woodville (Alabama) High School Student Government Association will sponsor a walk-a-thon in memory of Riley Corbitt (NPC) on Saturday, October 16.  The event will begin at 10:00 a.m., at the Woodville High School.

Walk-a-thon participants are asked to try for six sponsors each, representing the six years Riley was with us. Click here for a sponsor sheet.

[Sept 24, 2010 mem]


Collin and Cohen Parody

"A Day Out Against
Niemann-Pick"
Saturday, October 9, 2010
Brownville Legion
Brownville, New York

You're invited to a day full of fun in support of Collin and Cohen Parody and their family in their journey toward finding a cure for Niemann-Pick Disease Type B!

Parody family

Come to the Brownville Legion on Saturday, October 9, for a Children's Carnival, from 2:00 - 6:00 p.m., featuring games, prizes, food, and a dunking booth with local celebrities! 

Then, "book the babysitter, Mama," because the adults are going to have a blast at the evening's "Revenge of the '80's: The Sequel" dance, from 7:00 until ???  Break out your leg warmers, leather britches, and funkiest attire, because there will be a costume contest, raffles, beverage specials and plenty of entertainment!  Music will be provided by DJ Derek and DJ R. Best in their final performance.  A $5 donation is requested.

Check out this article about the Parody boys and the family's fundraiser, from the Newzjunky.com Web site.

Click here for a printable flyer/poster about the Day Out Against Niemann-Pick Disease.

UPDATE: The "Day Out Against Niemann-Pick" event had a huge turnout, and proclamations of October as Niemann-Pick Disease Awareness Month were signed by both Mayor Graham for the City of Watertown (NY) and the other from Senator Aubertine of the NY State Senate!  Congratulations to the Lane-Parody family, and Thank You for your support of the NNPDF!

Visit YNN (Your News Now) to see a video clip and read the article about the family's October 9th event.

[Oct 12, 2010 mem]

Tacoma School of the Arts Walk-a-Thon
October 8, 2010

Ty Quandt
Ty Quandt (NPC)

Students of the Tacoma (Washington) School of the Arts will participate in a walk-a-thon to benefit the NNPDF on Friday, October 8th.  The school's 456 students will walk in honor of Ty Quandt (NPC), the son of NNPDF Board Chair Karen Quandt and her husband, Gene, of Edgewood, WA.

NNPDF member Lorna Tyrrell (mom of Naomi, NPC) is designing a special shirt for the walk-a-thon, with a dragon on the front (at Ty's request) and the motto PERSEVERE on the back.

[Aug 24, 2010 mem]


Cruise for Adam
Sunday, October 3, 2010
Farmersville Elementary School
Easton, Pennsylvania

Adam Recke
Adam Recke (NPC)

The Third Annual Cruise for Adam event will be held on Sunday, October 3, from 12:00 noon until 4:00 p.m., at the Farmersville Elementary School.  This event is being hosted by the Easton Area Corvette Club and the Farmersville Elementary School in honor of 11-year-old Adam Recke, who is affected by Niemann-Pick Disease Type C.

All car makes and models are welcome, and there will be food, music, a bake sale, 50/50 drawing, used book sale, etc.  A donation of $5.00 per car would be appreciated, and the event will be held rain or shine.

For directions to the school, and a printable poster/flyer about the event, click here.

[Sept 17, 2010 mem]


Big House Big Heart Event
Taft Family and Friends to Raise Funds in Memory of Little John and Kate
October 3, 2010
Ann Arbor, Michigan

Kate and John Taft  

The family and friends of John and Chris Taft will participate in the Big House Big Heart (BHBH) 5K/10K walk/run on Sunday, October 3rd, to raise funds in memory of the Taft's children, Little John and Kate, who both passed away from Niemann-Pick Disease Type A. 

The BHBH starts and finishes at the famous University of Michigan's famous football stadium, "The Big House."  It's the largest stadium of its kind in the country, seating over 107,000 spectators, according to the BHBH Web site: http://www.thebighousebigheart.com.

Run/walk participants will conclude the race by going through the tunnel onto the football field, viewing themselves on the Big House Big Screen!   Walkers, strollers and wheelchairs are welcome! 

Sign up by August 31st to take advantage of the discounted registration fee.
5k and 10k: $32 prior to Aug. 31; $36 from Sept. 1 - Oct. 1; $39 the weekend of the race
1 mile fun run: $13 prior to Aug. 31; $18 from Sept. 1 - Oct. 1; $23 the weekend of the race

Sample Fundraising Letter          Donor Pledge Card            Donation Record    

[Aug 27, 2010 mem]


Dillon Papier Charity Golf Tournament
Friday, October 1, 2010
Hollow Creek Golf Club
Middletown, Maryland

Dillon Papier
Dillon Papier, age 7

The annual Dillon Papier Charity Golf Tournament is set for Friday, October 1, 2010.  Registration will begin at 9:00 a.m., with a shotgun start at 10:30.  This is a 4-person scramble format tournament.  Prizes for closest to the pin, longest drive, etc., plus raffles, gift bags, and other prize opportunities.  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 7, 2010 mem]


Hunter's Hope Memorial 14th Annual Drive for the Cure
Golf Tournament and Auction
Friday, September 17, 2010
Hanging Rock Golf Club
Salem, Virginia

Update:  The 2010 golf outing was very successful, and a highlight was the participation of Raiden Linkous (age 14, NPC) and his dad, Dwayne Linkous.  Raiden is shown below, drawing the winner for a prize drawing.   For a slideshow of photos from the golf outing, click here.

Raiden Linkous drawing the prize wiinner

Hunter Ozmer

Hunter Ozmer (NPC)
6/7/85 - 1/3/08

The 14th Annual "Hunter's Hope" Memorial Golf Tournament and Auction fundraiser to benefit the National Niemann-Pick Disease Foundation will be held on Friday, September 17.

The $100.00 Hunter’s Hope tournament package includes golf cart, greens fee and awards dinner, a special Hunter’s Hope golf shirt, 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.

Click here for the tournament brochure, and here for the entry form and sponsorship form.

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 (www.huntershopememorial.com). 

[July 26, 2010 mem]


Hometown Heroes Parade
Eureka, Missouri

Emily Hrbacek
Emily Hrbacek (NPC)
7/15/99 - 7/1/10

Emily Hrbacek was recently honored in a parade as the Eureka, Missouri, Hometown Hero.   Emily, the daughter of Laura and Scott Hrbacek, passed away earlier this summer as a result of Niemann-Pick Disease Type C.

[Sept 17, 2010 mem]


Katlyn Sumbad Memorial Golf Tournament
Saturday, August 28, 2010
Stevinson Ranch Golf Club

Katlyn Sumbad
Katlyn Sumbad (NPD Type A/B)
4/8/06 - 11/24/08

The Sumbad-Pruneau family is busy organizing the fourth annual Katlyn Sumbad Memorial Golf Tournament, to be held on Saturday, August 28.  This year's tournament will be held at the renowned Stevinson Ranch Golf Club.

Update:  The 2010 Katlyn Sumbad Memorial Golf Tournament was a great success!  Golfers were very happy with the new course location, and a good time was had by all.  Thank you, Sumbads and Pruneaus, for all your hard work and dedication!

2010 golf tournament participant 2010 golf tournament scene
Scenes from the 2010 Katlyn Sumbad Memorial Golf Tournament

[May 5, 2010 mem]


Sullivan Family Neighborhood Carnival in Memory of Karen Sullivan
St. Louis, Missouri

Karen Sullivan Carnival scene
Karen Sullivan as a little girl
7/27/70 - 4/12/04
Scene from the neighborhood carnival
Sullivan kids Carnival poster
Carnival hosts Jason, Sarah and Abby Colorful posters advertised the carnival

Jason, Sarah and Abby Sullivan, ages 10, 7 and 5, respectively, organized and held a backyard carnival to raise funds for the NNPDF in memory of their aunt, Karen Sullivan, who died as a result of Niemann-Pick Disease Type C. After planning the event for several weeks, the children made signs and posters to advertise and invite their friends and neighbors to come for games, prizes, and food.

The whole family got involved as one grandma made funnel cakes and another ran the bean bag toss, while the two grandpas ran the golf game and served as the event photographer. The late-summer heat wave even broke in time for a perfect evening, and the neighborhood was very supportive, raising almost $500 for the fight against NPD! 

Jason, Sarah and Abby are the children of Kevin and Jean Sullivan, and the grandkids of Art and Nancy Sullivan of Chesterfield, Missouri. Nancy recently retired from the NNPDF Board of Directors and Art serves on the NNPDF's Finance Committee.

Thank you, Jason, Sarah and Abby, and the entire Sullivan family!

[Aug 27, 2010 mem]


Oravec Twins' Birthday Party Raises Funds and Awareness
Shelton, Connecticut

Samantha and Tyler Oravec Oravec Twins
Samantha and Tyler Oravec celebrate their 8th birthday by generously donating gifts to NNPDF.

Twins Samantha and Tyler Oravec recently celebrated their 8th birthday with a party.  In lieu of traditional birthday gifts, the family asked their guests to donate to the NNPDF in honor of 8-year-old Naomi Tyrrell, who is affected by Niemann-Pick Disease Type C.

NNPDF newsletters were given to guests to help spread awareness of Niemann-Pick Disease.  The twins are the children of Liz and Peter Oravec.   Thank you to the Oravecs, and a special thank you to party guest "MacKenzie," who gave from her heart and her very own piggy bank!

[Aug 24, 2010 mem]


Quassy Amusement Park Fundraiser
Sunday, August 22, 2010
Middlebury, Connecticut

Bryanna and Judy DeSouza

Bryanna Desouza (NPC) 1/20/92 - 12/5/06 
with mom, Judy Desouza

Join Judy Desouza and family and friends at Quassy Amusement Park on Sunday, August 22, to raise funds for NPC in memory of Judy’s daughter, Bryanna Desouza.

The event will include All Day Rides, Quassy Beach and Saturation Station, and a catered dinner in the park’s private patio area overlooking Lake Quassapuag.  Raffle baskets will also be available during the dinner, with proceeds benefiting the fundraiser.  

Price: $21/ticket.  NNPDF donation included in each ticket price. Free parking.

Get your tickets early, before July 1, 2010!   See the flyer/poster here.     Click here to email Judy for tickets.

[Feb 19, 2010 mem]


2nd Annual Baltimore Orioles Dillon Papier Benefit
Baltimore Orioles vs. Texas Rangers
Sunday, August 22, 2010
12:00 - 1:00 p.m. Hospitality
1:35 p.m. Game time

Dillon Papier and Brian Roberts
Brian Roberts and Dillon Papier (NPC)

Come and celebrate Dillon Papier's 8th birthday with his family, friends, and the Baltimore Orioles! Your support will fund critical research into treatments and a cure for the devastating, fatal disease that is Niemann-Pick Type C (NPC).

Please join us on Sunday, August 22nd, at Oriole Park Stadium. This special package includes game ticket and dining/drinks/beer in the exclusive Camden Club from 12:00 - 1:30 p.m. Also, there will be an Orioles memorabilia silent auction, and possibly even an Orioles guest appearance!   Game time is 1:35 p.m., vs. the Texas Rangers.

Here is a printable flyer/poster with all the details of the event, or visit Dillon's Fight for more information.

Camden Club Hospitality and Game Tickets - $40 each. Any additional donations will be deeply appreciated.

For tickets, please RVSP by August 16 to one of the following volunteers:

Erik Scheidhauer        Pete Jeram       Darrile Papier

Donations may be sent to:

NNPDF
Attn: Dillon Papier
9741 Royal Crest Circle
Frederick, MD 21704

[July 8, 2010 mem]


A Day on the Bowling Green
Millswood, Australia
Sunday, August 15, 2010
12:00 noon

Sam Roberts
Sam Roberts (NPC)
6/30/00- 4/19/05

A day of bowling will be held to raise funds for the Paediatric Palliative Care Unit of the Adelaide Women and Children's Hospital.  The event is in memory of Sam Roberts, who passed away at the age of 4, from the effects of Niemann-Pick Disease Type C. 

A Day on the Bowling Green will be on Sunday, August 15th, beginning at 12 noon, with lunch at 1:00, and bowling at 1:30.  The location for the event will be the Millswood Bowling Club, 20 Millswood Crescent, Millswood, Australia.

In addition to bowling, the day will include live music, face painting, and more activities for children.  Click here for a flyer, including information on how to purchase tickets in advance. 

[Aug 4, 2010 mem]


2010 Frederick Keys Benefit for Dillon Papier
Frederick, Maryland
August 14, 2010
6:00 p.m.

Frederick Keys photo

Enjoy a ballgame with friends and family on Saturday, August 14, at 6:00 p.m., at the Frederick Keys Harry Grove Stadium, and join the fight against Niemann-Pick Type C (NPC) disease. Spectacular fireworks will follow the game!

By sharing in Dillon's love of baseball, you will be making a difference, funding critical research to find a cure for this devastating, fatal disease.

Reserved seats are $10 (50% tax deductible), and additional donations are deeply appreciated.

Click here for a flyer about the event. Please print it out and help us spread the word!   Visit Dillon's Fight for more information.

For tickets, contact Gary or Windy Irwin or Darrile Papier.  

Please mail donations to: NNPDF; Attn: Dillon Papier; 9741 Royal Crest Circle; Frederick, MD; 21704.

Thank you for your generous support!

[July 8, 2010 mem]


Ride for Adam
Benefit Poker Ride and Picnic
Saturday, August 14, 2010
Beginning at 10:00 a.m.
Schnecksville (Pennsylvania) Fire Company Pavilion

Adam Recke

The W. Casey Stengel Trucking company will sponsor the 2010 Ride for Adam Poker Run and Family Picnic on Saturday, August 14.  This annual event, held in honor of Adam Recke, will benefit the NNPDF and further research into treatments and a cure for Niemann-Pick Disease. 

Live entertainment, kids' area with crafts and face painting, a picnic, and the poker ride will make this a full day of fun and enjoyment.

Please visit www.raceforadam.org for registration details, volunteer opportunities, and a printable poster.

Adam Recke (NPC)  

July 26, 2010 mem]


bowling pins

Bowl for a Cure:  Project Andy
Park Place Lanes
Windham, New Hampshire
Sunday, August 8, 2010|
12:00 - 4:30 p.m.

Andy Wood

The second annual Bowl for a Cure:  Project Andy will be held on Sunday, August 8th, to raise awareness and funds for Niemann-Pick Disease.  This bowl-a-thon will be held in honor of Andy Wood (NPC), in conjunction with the North Salem United Methodist Church Youth Group and will benefit the NNPDF. The event will also include a silent auction and raffle prizes. 

Bowlers, sponsors, and prize donors are being sought.  For more information or to sign up, call Cindy at 603-893-0027; Aletha at 603-401-6975; or Todd at 603-235-1130. 

Donations may be made payable to Project Andy/NSUMC Youth, and mailed to Project Andy; P.O. Box 206; North Salem, NH; 03073.


[July 26, 2010 mem]


In Honor of Gregorio N. Martinez III
Temple, Texas
Saturday, August 7, 2010
7 a.m. - 1 p.m.

Gregorio Martinez
Gregorio Martinez III (NPA)

West Temple Community Park in Temple, Texas, will be the site for the 2nd Annual Niemann-Pick Disease Type A Walkathon in honor of little Gregorio N. Martinez III.   Three-year-old Gregorio (known as "Tutu" to his friends) is affected by Niemann-Pick Disease Type A.

The event will be held on Saturday, August 7th, opening at 7:00 a.m. and continuing until 1:00 p.m. 

[June 24, 2010 mem]


RAGBRAI logo

RAGBRAI Ride in Honor of Dillon Papier
July 25 - 31, 2010
Iowa

Steve Daitch, friend and supporter of Dillon Papier (NPC), will ride across Iowa from the MIssouri River on the west to the Mississippi River on the east in honor of Dillon in this year's 38th annual RAGBRAI, July 25 - 31, 2010.

Sponsors and donors are being sought for this fundraising and awareness event. Donations will fund rese
arch to find treatments and a cure for NPC. Please join Steve Daitch and Dillon's Army as we bring all our resources to bear against this formidable foe!

Click here for Steve's RAGBRAI sponsor/donor sign-up sheet.

For more information or to make a donation, contact Darrile Papier, or visit Dillon's Fight.

Donations may also be mailed to:

NNPDF
Attn: Dillon Papier
9741 Royal Crest Circle
Frederick, MD 21704

Please note "RAGBRAI" in the memo area of your check.

Thank you for your "Gift of Hope!"

[July 8, 2010 mem]


RAGBRAI Team to Ride in Honor of Tylor White-Richardson
July 25 - 31, 2010
Iowa

RAGBRAI team and Tylor
RAGBRAI Team "Ride4Tylor" with honoree Tylor White-Richardson (NPC)


2010 RAGBRAI (The Register's Annual Great Bicycle Ride Across Iowa) participants and spectators will learn about Niemann-Pick Disease as the Ride4Tylor team makes the long trek in honor of Tylor White-Richardson (NPC) of Dubuque, Iowa/Galena, Illinois.  The team will be followed by a support van displaying the NNPDF banner and logo.

Team members include, 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 2010 RAGBRAI, in its 38th year, is the oldest, largest and longest bicycle touring event in the world.  Crossing Iowa from the Missouri River on the west to the Mississippi River on the east, the RAGBRAI route averages 472 miles.

[June 23, 2010 mem]


3rd Annual Riley's Run
American Cruisers Chapter 45
Jackson County, Alabama
July 24, 2010
10:00 a.m. - 3:30 p.m.

Riley May Corbitt
Riley Corbitt (NPC)
7/27/02 - 10/29/08

The Third Annual Poker Run Motorcycle Ride in memory of Riley Corbitt will be held on Saturday, July 24.  The ride will start and end at Woodville Elementary School, with registration and bike wash scheduled for 10:00 - 11:00 a.m.  The first bike will go out at 11:00 and the last bike must be in by 3:30 p.m. The ride will be approximately 90 miles long. 

The cost is $20 per hand, and $10 for an extra hand, including door prizes, drawings and food.  Sponsored by the American Cruisers Chapter 45 of Alabama, proceeds from the ride benefit the NNPDF.

Click here for the flyer/poster.  The motorcycle club has also dedicated a page of their Web site to Riley.

[June 10, 2010 mem]


Dubuque Bruisers to Host Fundraising and Awareness Event
Saturday, July 17, 2010
Dubuque, Iowa

Tylor White Richardson (NPC) with mom, Jennifer White, and Brian Simon
Tylor White-Richardson (NPC) with mom,
Jenn White, and Brian Simon


Semi-pro football team, the Dubuque Bruisers (Iowa), will support the NNPDF at their home game event on Saturday, July 17, 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 be covering the event, as well.

[May 18, 2010 mem]


 Ironman Competitor Raises Funds and Awareness for NPD
Sunday, June 27, 2010
Coeur d'Alene, Idaho

Mike Smith
Mike Smith
Ironman Competitor
Mike Smith, husband of NNPDF member Anne Marie OConnor-Smith (NPB), will compete in the Ford Ironman Triathlon in Coeur d'Alene, Idaho, to raise funds for the NNPDF and raise awareness of Niemann-Pick Disease.   The triathlon is the ultimate test of strength, endurance and determination, consisting of swimming 2.4 miles, biking 112 miles, and running 26.2 miles. An Ironman certainly embodies the NNPDF motto -- "Persevere!"

Mike's fundraising goal is $3,000, and he hopes to raise enough to qualify for a Janus challenge matching fund donation, as well.  Visit Mike's page to make a donation and read more about his motivation.

[May 25, 2010 mem]


Perugini Logo

Sunday, June 27, 2010
Holy Cross High School
Waterbury, Connecticut
1:00 p.m.

Perugini memorial walk scene face painting
Scenes from the 2010 Perugini Memorial Walk

The Marcello and Matthew Perugini Memorial Walk will be held on Sunday, June 27, at Holy Cross High School, 587 Oronoke Road, Waterbury, Connecticut.  Registration will be from 1:00 - 2:00 p.m., with the walk and picnic from 2:00 - 3:00 p.m.  Each participant will receive a "Persevere" wristband, food and water will be provided (featuring Frankies hot dogs), and prizes will be awarded to the individual walker and team raising the most money.  There will also be a raffle for restaurant gift certificates and other prizes.

A minimum donation of $10 per walker will be asked.  Donations from non-walkers are greatly appreciated, as well.  Proceeds benefit the National Niemann-Pick Disease Foundation.

Click here for a letter to participants, and click here for the registration form.

[June 16, 2010 mem]


Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction
Saturday, June 26, 2010
Spring Creek Golf Center
Cold Spring, Wisconsin

The Vorpahl Family 2010 Stacey Vorpahl
The Vorpahl Family 2010 Stacey Vorpahl (NPC)
1/3/85 - 10/9/04

Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, June 26, 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.

For more details, including a flyer and a list of silent auction items, click here.

[June 9, 2010 mem]   


Hanover 5K Road Race
In Memory of Erin Arline Roberts
Saturday, June 26, 2010
Hanover, Massachusetts

Roberts family 2010 Erin Roberts
The Roberts Family 2010 Erin Arline Roberts, NPC
4/5/80 - 12/1/04

On June 26th , the Hanover (Massachusetts) Chamber of Commerce will sponsor the 7th Annual  5K Road Race/ Walk in memory of Erin Roberts, who died from Niemann-Pick Disease Type C at the age of 24.

Erin's mother, Holly, writes, "The first year the Chamber dedicated the run for Erin, we pushed Erin in her wheelchair. As we approached the finish line all of Erin's family and friends gathered around her to cross the finish line with her.  Erin's family and friends continue to run/walk in her memory. Each year as we cross the finish line we think of Erin and all of the individuals that have died from NPD."

For complete details visit the Hanover Chamber of Commerce site, or download the registration form here.

[June 9, 2010 mem]   


Evening of Jazz
Vaughan, Ontario Canada
Friday, June 25, 2010
6:30 - 10:00 p.m.

jazz graphic

Join us for an evening of live music and BBQ on Friday, June 25!  Hosted by BMO Bank of Montreal at 3737 Major Mackenzie Dr. and Weston Rd., this is a great way to kick-start your summer.  Come listen to some cool tunes of hot jazz, fusion, and groove, from 6:30 - 10:00 p.m.

Donations will be gratefully accepted to benefit the Life for Luke Foundation and Vaughan in Motion.

Click here for the event flyer/poster.

[June 8, 2010 mem]


The 8th Annual Alex and Laura Vaughan Memorial Golf Tournament
Saturday, June 19, 2010
Durham, Ontario, Canada

     Alex Vaughan Laura Vaughan

Alex Vaughan, NPC             Laura Vaughan, NPC
4/18/88 - 12/23/92                    1/16/95 -11/8/01


Mark your calendar for the 8th Annual Alex and Laura Vaughan Memorial Golf Tournament on Saturday, June 19.   This golf tournament will be 4-person teams, Best Ball format.  The $100 per golfer fee incudes 18 holes of golf, power cart and dinner, along with a chance to win exciting prizes at designated holes. 

Hole sponsors, raffle prize and silent auction donations, and monetary donations are also being solicited in support of this event.

Please read this special letter from CCNNPDF Chair Tammy Vaughan, mom to Alex and Laura. 

Click here for the Entry Form and Sponsor/Donor Form.

Update 6/21/10

Winning team Vaughan golf outing
The winning team from the 2010 Vaughan Memorial Golf Tournament

The golf tournament was a great success, and we received this message from the Vaughan family:

Once again the sun shone on the golf course (our connection in heaven straight to Mother Nature really helps) and we had another outstanding day.  Lots of fun was had by all, and thanks to all of you, lots of money was raised for Niemann-Pick Disease research - $22,000!!!

As I have said many times, words can simply not express the gratitude that we feel to all of our friends and family and the generous businesses throughout Canada and the US that support us year, after year,  after year, in our quest to find a cure for this life stealing disease.  Many of the golfers out on the course have been to every tournament so far – that’s just awesome.  A special thank you once again to our platinum sponsors – P&H Foods, Durham Furniture, Energizer Canada and Royal Containers – without these guys we simply wouldn’t have the golf tournament that we do.

So once again, THANK YOU EVERYONE, for helping us make the 8th Annual Alex and Laura Vaughan Memorial golf tournament another huge success.  Please keep Saturday, June 25, 2011, open and come on out again for another fun day in the sun at the 9th Annual Alex and Laura Vaughan Memorial Golf Tournament!

Tammy, Allan and Michael.

[Mar 31, 2010 mem]


Yearbook Dedicated in Memory of Bryanna DeSouza
Class of 2010
Naugatuck, Connecticut

Bryanna DeSouza and Judy DeSouza
Bryanna DeSouza 
(1992-2006),
and mom, Judy DeSouza

The Naugatuck (Connecticut) High School dedicated the 2010 school yearbook in memory of classmate, Bryanna DeSouza (NPC), who would have graduated this month with the Class of 2010.

This page appears in the yearbook as part of the memorial dedication. Mom Judy DeSouza was invited to the school on June 11 to receive the yearbook with her daughter's class.

[June 15, 2010 mem]


5th Annual Bowie Baysox Dillon Papier Benefit
Sunday, June 6, 2010
2:05 p.m.

Dillon Papier and Grandma Maris Walker
Dillon Papier and Grandma Maris Walker

The 5th Annual Bowie Baysox Dillon Papier Benefit will be held on Sunday, June 6, beginning at 2:05 p.m. Tickets for lower reserved seating are $14 (50% tax deductible), and donations will also be gratefully accepted.

Tickets: Contact Maris at 301-464-8935 or 301-529-6481 or email Maris, or mail your request to: Maris Walker,
3900 Winchester Lane, Bowie, MD 20715.

Donations: Please make checks payable to the NNPDF (National Niemann-Pick Disease Foundation), and send to Darrile Papier, 9741 Royal Crest Circle, Frederick, MD, 21704.

Dillon's family, friends, teachers, doctors, and all other NPC children and the families who love them THANK YOU for providing "The Gift of Hope!"

For more details:  Printable flyer/poster for the Baysox event or visit Dillon's Fight Web site.

Baysox Prince George's Stadium, 4101 N.E. Crain Highway (Route 301-S), Bowie, MD, 20716   http://www.baysox.com

[Mar 31, 2010 mem]


4th Annual Ducks for Bucks Fundraiser
Turley, New Mexico
June 5, 2010
12:00 - 5:00 p.m.

Ducks for Bucks Jami and Lisa Chavez
Breann Chavez (NPC)
2/10/03 - 6/8/06
Breann's parents, Jami and Lisa Chavez, prepare to
launch the ducks for heat 4.

Dainty Duck Dash!  Family Fun Day!  Games and Prizes!  Raffles!  Silent Auction!  Live Music!  Food!  And Wines of the San Juan!

The 4th Annual Ducks for Bucks event will be held on Saturday, June 5, in memory of little Breann Chavez.  Breann, the daughter of Jami and Lisa Chavez, passed away from NPC at the age of 3 years.

For more information, visit Ducks for Bucks or look for Ducks for Bucks on Facebook.


"Night of Musical Theatre" to benefit NNPDF
Puyallup, Washington
June 3 - 5, 2010

Ty Quandt
Ty Quandt (NPC)
The Drama Club at Kalles Junior High School in Puyallup, Washington, will donate all proceeds from their upcoming show, "Night of Musical Theatre," to the NNPDF in honor of classmate Ty Quandt (NPC). The show will begin at 7:00 p.m. on June 3rd, 4th, and 5th, at Kalles Junior High, 501 7th Avenue SE, Puyallup. The suggested donation is $5 at the door.

The Quandt family plans to attend the Saturday evening performance, and Ty will be introduced at the opening of the show!

Thank you, Kalles Drama Club!  Break a leg!

[May 28, 2010 mem]


March 27 - Cherokee Lake, Tennessee
May 29 - Claytor Lake, Virginia

Fishin for the Mission Fishing Team Fishing for Charities logo
Our 2010 tournament schedule will run throughout Virginia, North Carolina and Tennessee, with proceeds donated to selected charities.  

We would love for you to be a part of an event that everyone can benefit from.
Fishin’ for the mission!

Fishin' for the Mission Team with Raiden Linkous (NPC)
front and center, and dad Dwayne directly behind him.

 

Fishing For Charities is a bass fishing tournament trail that is devoted to raising money for various charities. The NNPDF will be the recipient of funds raised at two events to be held March 27 at Cherokee Lake, Tennessee, and May 29 at Claytor Lake, Virginia. 

For full details including registration information, rules, etc., please visit www.fishingforcharities.com

[Feb 5, 2010 mem]


Race for Adam
Fifth Annual 5K Run/Walk
May 1, 2010
Allentown, Pennsylvania

Recke Family
Adam Recke (NPC) and Family

The Fifth Annual Race for Adam 5K Run/Walk will be held Saturday, May 1st, 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.

FANTASTIC raffle prizes!  Click here to see the list!    The huge list of prizes includes roundtrip airfares, autographed hockey stick/puck, professional teeth whitening services, zoo passes, chiropractic care, massages, hotel stays, etc.  Check it out!

Proceeds will benefit the Race for Adam Foundation, SOAR (Support of Accelerated Research) and the NNPDF.   Visit www.raceforadam.org for more details including a registration form.

4/13/10 -- This note from Matthew Tobias, President of the Race for Adam Foundation:  "Don't forget that it is not too late to register for the 5K Run/Walk on May 1st at the Lehigh Parkway.   We still have t-shirts if you register now.  Also, we only have 9 tickets left for the Iron Pigs on June 19th.  Hope to see you at one or both of these events." 

[Feb 18, 2010 mem]


Running 4 Kelly
Marathon and Half-Marathon Team to Raise Funds for NNPDF
April 24, 2010

Kelly Thompson and brother Jim Thompson Finish line at 2009 marathon
Kelly Thompson and her brother, Jim, one of the marathoners The finish line at the 2009 Country Music Marathon

Rebecca McGuire, cousin of Kelly Thompson (NPC), is organizing a team and training in preparation for the Country Music Marathon in Nashville, Tennessee, on April 24.  The team will run to raise money for research and family support services in honor of Kelly Thompson, who is affected by Niemann-Pick Disease Type C.

Running 4 Kelly Team members include:  Rebecca and her husband, Brad McGuire; Kelly's brother, Jim Thompson; another cousin, Kate Carpenter; and good friends Kerry Benoit and Corey Kozuch.

Check out the team blog here, and follow their progress up to the event.  Donations toward the team goal of $3,000 may be made online through Canada Helps or by mailing your check to NNPDF -- please be sure to note in the dedication box or memo line that your donation is in honor of Running 4 Kelly.

[Feb 11, 2010 mem]


Bowl-a-Thon to Benefit NNPDF
Milford, Connecticut
Saturday, April 10, 2010
2:00 - 4:00 p.m.

Naomi Tyrrell

Naomi Tyrrell (NPC)


Donna Lynn Naeher, great-aunt of Naomi Tyrrell, together with her friend Maria Pereira, is coordinating a bowl-a-thon which will benefit NNPDF in honor of little Naomi.   The women's real estate office, Keller Williams (Stratford and Trumbull, CT), will be participating in the event.

[Mar 25, 2010 mem]


Third Annual Ryan's Ride Poker Run
American Legion Riders Chapter 75
Saturday, March 27, 2010

Ryan Richardson
Ryan Richardson (NPC)
5/27/00 - 10/18/05

The American Legion Riders Chapter 75 of Crestview, Florida, will once again ride and raise money to fight Niemann-Pick Disease in memory of Ryan Richardson (NPC).  The ride will be held on Saturday, March 27.

Ryan's mom, Sherry, writes:

"If anyone will be near the Florida Panhandle in Crestview, Florida, this weekend, I invite you to attend the 3rd annual Ryan's Ride benefiting the foundation.

It is so hard to imagine my sweet little man has been gone almost 5 years, but not forgotten. We hope to raise much awareness and money for our NPD families who continue to fight this disease. An article was written today and I wanted to share with you. We hope our NPD family is doing well.

Love to all,

Sherry Richardson"

The article Sherry refers to appeared in the Crestview Bulletin and is available here.

[March 25, 2010 mem]


"March Gladness" Project Supports Soldiers and NPD Persevere Campaign
Students' Volunteer Efforts Benefit Two Causes

Students of Operation Shoebox Persevere shirts
Mt. View Elementary Students recently participated in Operation Shoeboxes for Soldiers as part of their district's "March Gladness" volunteer event. Persevere wear, wristbands, and shopping bags were boxed with snacks, toiletries, postage, etc., for soldiers stationed overseas.

Students of Mt. View Elementary School in Edgewood, Washington, recently participated in their school district's "March Gladness" volunteer event. The kids donated items such as toothpaste, books, snacks, and postage as part of Operation Shoeboxes for Soldiers. The students also collected cash donations to purchase NPD-awareness "Persevere" t-shirts, wristbands and shopping bags. The items were packaged and sent to 11 Seattle-area police officers who are currently deployed overseas.

Nancy Kreuger of the Mt. View Elementary staff, key volunteer at the 2009 NNPDF Family Support and Medical Conference, and dear friend of NNPDF Board Chair Karen Quandt and family, sent us the wonderful photos above. 

[March 19, 2010 mem]


Raising Funds and Awareness
School Shows Support for Cardinal Family and Others Affected by NPD

Damon Eli Cardinal Dylan and Mrs Lashmar
Damon Eli Cardinal (NPA)
12/26/06 - 4/16/08
Dylan and his teacher, Mrs. Lashmar, with some of the items collected for the raffle
Alexis and Dylan Cardinal Alexis Cardinal and her poster
Alexis and Dylan with the Raffle Items Alexis and her beautiful poster

As the two-year anniversary of the passing of little Damon Cardinal (NPA) approaches April 16, St. Teresa's School, where Damon's three eldest siblings attend, is planning a balloon release to honor Damon's memory. Nine-year-old Dylan Cardinal's teacher, Mrs. Theresa Lashmar, is also planning an awareness and fundraising event in memory of Damon.  Mrs. Lashmar's students will have the opportunity to purchase raffle tickets for movie passes and popcorn donated by Cineplex Odeon Theatre, with proceeds to benefit the CCNNPDF.  The class will also watch a video and make scrapbook pages in memory of Damon for Dylan to take home as a keepsake. 

[Feb 15, 2010 mem]


Yankee Candle Sale to Benefit NNPDF
March 4 - 18, 2010
Naugatuck, Connecticut

Bryanna Scribner DeSouza
Bryanna Scribner Desouza (NPC)
1/20/92 - 12/5/06
Judy Desouza will hold a Yankee Candle Company fundraiser in memory of her daughter, Bryanna Scribner Desouza (NPC), from March 4th through the 18th.  Candles will be delivered to Judy for local pickup or delivery in Naugatuck, Connecticut.   Please email Judy for more information.

[Feb 10, 2010 mem]

9th Annual Life for Luke Annual Gala
Saturday, March 6th, 2010
Riviera Parque Dining, Banquet & Convention Centre
Vaughan, Ontario Canada

Life for Luke logo

Update:  The 2010 Life for Luke Gala was a great success!  
Videos from the event have been posted to YouTube: Life for Luke 2010 #1      Life for Luke 2010 #2
A link to local coverage of the gala:   Snap Woodbridge's Life for Luke article

Here are some more photos from the event:

auctioneer auction items
buffet food group photo

The Life for Luke Foundation will host its 9th Annual Dinner Dance and Silent Auction Gala in support of the Canadian Chapter of the NNPDF and the Hospital for Sick Children on March 6. Scrumptious foods from around the world, superb service, and outstanding entertainment will make for a spectacular evening not to be missed.

Singing sensation Daniel Panetta and comedian Frank Spadone will headline the evening's entertainment.  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.

The gala will 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, or log on to www.lifeforluke.com for a printable order form.

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.

For the complete press release regarding the gala, click here, or visit www.lifeforluke.com for more information.

[Feb 10, 2010 mem]


"Party of Gold" Fundraiser
Saturday, March 6th
12:00 - 2:00 p.m.
Torrington, Connecticut

Kelly Thompson and Becky McGuire
Kelly Thompson (NPC) and
cousin Becky McGuire

Becky McGuire, cousin of Kelly Thompson (NPC), will host a "Party of Gold" on March 6th, to raise money for the fight against NPD.  Partygoers are invited to bring their unwanted gold or platinum items and turn them in for money.  The price given is based on current market value, with 8k, 10k, 12k, 14k, 18k, 22k and 24k gold items, and platinum items, accepted.  Snacks will be provided, as well.  The hostess will be making a donation from her percentage of the proceeds on behalf of the Running 4 Kelly marathoners.

If you would like more details, or if you are interested in selling your gold/platinum items but are unable to attend the party, contact Becky in advance to make arrangements.

[Feb 24, 2010 mem]


World Rare Disease Day
February 28, 2010

Kaiden St Germain
Kaiden St. Germain
The family of Kaiden St. Germain is participating in Rare Disease Day by creating and distributing a flyer and lapel ribbons to raise awareness at Kaiden's school and around the community.   Click here to see the flyer, and click here to watch their awareness video.    Click here to learn more about World Rare Disease Day and ways you can get involved.

[Feb 4, 2010 mem]


Massanutten Resort Getaway Raffle
Drawing January 4, 2010

Dillon Papier
Dillon Papier (NPC), age 7

Win a fabulous one week getaway at beautiful Massanutten Resort in the heart of Virginia's Shenandoah Valley!  Raffle tickets are available now for $5 for 1, $10 for 3, etc.  Proceeds will benefit the NNPDF for NPD Type C research, in honor of Dillon Papier, son of Mark and Darrile Papier of Frederick, Maryland. The raffle winner will receive a week in a two-bedroom, two-bath (whirpool tub) condo, complete with kitchen, fireplace and two decks.  The condo sleeps up to six people. 

Massanutten Resort is within a two-hour drive of Washington, D.C., and offers skiing, tubing and snow boarding during the winter.  Hiking, biking and golf are enjoyed most of the year.  There is an indoor waterpark and two indoor sports complexes for more year-round fun.   The area is overflowing with attractions to delight history buffs, antique shoppers, and nature lovers.

For all the details, or to print out a flyer/poster, click here.  

[Dec 1, 2009 mem]


Child Star Kaitlyn Maher Sings for Kids with NPD

In this YouTube video, Kaitlyn Maher performs her inspirational song, "You Were Meant To Be," for children with Niemann-Pick Disease.  The video features photos of children with Niemann-Pick Disease Type C.

Maher was an America's Got Talent Top 10 performer in 2008, at the age of 4 years old! Kaitlyn is now a "grown up" six-year-old,  with a new album released in December 2009..

Kaitlyn also served as the voice of the puppy "Tiny" in the movie Santa Buddies, and recently finished filming for a new movie The Search for Santa Paws, to be released later this year.

[Jan 18, 2010 mem]


"Inspirational Quilt" Showcases NPD Family Videos

The movie Extraordinary Measures, set to premier January 22, is hosting a video contest with a theme of "Make Your Own Miracle."  Several of our NNPDF families have entered videos in the contest, focusing on the families' personal messages in support of NPC research.  The videos are arranged into an inspirational "quilt," which can be viewed here.

Videos relating to Niemann-Pick Disease which have been posted to the "quilt" so far include:

"And This My Child" -- in honor of Naomi Tyrrell, age 6 (NPC), and in memory of Breann Chavez (NPC)                                  Gavin Lopez -- in honor of Gavin Lopez, age 5 (NPC)
Save Gavin -- in honor of Gavin Lopez, age 5 (NPC)
Hadley's Hope -- in honor of Peyton Hadley, age 12 (NPC), and Kayla Hadley, age 9 (NPC)
Addi & Cassi's Story -- in honor of Addi and Cassi Hempel, age 5 (NPC)
Hope on the Horizon -- in honor of Elise Barton, age 4 (NPC)
Genetics 101 (narrated by Alec Baldwin) -- in support of lysosomal storage diseases  

To find a video, go to the SEARCH window below the “quilt” http://extraordinarymeasuresthemovie.com/#/quilt  (in the lower right-hand corner of the Web page) and type in the name of the video.  To cast your vote for a video, click the red VOTE button at the top right-hand corner of the video's window. 

Every vote each video receives will increase the chance that it will win and be awarded $10,000 toward their designated cause.

Extraordinary Measures tells the story of John and Aileen Crowley's desperate search for a treatment for their two children affected by Pompe disease, a fatal lysosomal disease related to Tay-Sachs. The movie stars Brendan Fraser and Keri Russell as John and Aileen Crowley, and Harrison Ford as scientist Dr. Stonehill. 

[Jan 15, 2010 mem]


Don's Seafood Restaurants Fundraiser
December 2009
Louisiana, Multiple Cities

Michael Landry
Michael Landry (NPC)
6/22/82 - 4/16/08

During the month of December, Don’s Seafood and Steakhouse and Don’s Seafood Hut Restaurants will raise awareness and funds for Niemann-Pick Disease in memory of Michael Landry.  Landry, who passed away in 2008 at the age of 25, was the son of Maureen Landry of Prairieville.

Throughout December, Don’s Seafood Restaurants will donate $2.00 from the sale of every seafood platter sold to benefit the NNPDF. 

Participating restaurants include Don’s Seafood and Steakhouse in Baton Rouge, Metairie, and Hammond; and Don’s Seafood Hut Restaurants in Lafayette, Denham Springs, and Gonzales.

[Dec 7, 2009 mem]


Scentsy Fundraiser for Niemann-Pick Disease Research
Products Available Online

Damon Eli Cardinal
Damon Cardinal (NPA)
12/26/06 - 4/16/08

Escential Consultant Janna Henke is hosting 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.

Elsa writes: "The products are amazing, and will make wonderful Christmas gifts for yourself or anyone you know.  Twenty percent of the total product sales are being donated to CCNNPDF [the Canadian Chapter of the National Niemann-Pick Disease Foundation]."

Scentsy products can be shipped and orders may be placed online by visiting Janna's Scentsy page

[Dec 4, 2009 mem]


Maine Vacation Package Raffle
Drawing December 12, 2009

Collin and Cohen Parody
Collin and Cohen Parody

A Maine vacation package is being raffled off to raise funds for the NNPDF in honor of Collin and Cohen Parody (both NPB).   The grand prize includes four nights at a brand-new Residence Inn in Portland, Maine ($1,076 value); 2 restaurant gift certificates ($100 value); $100 gift card to L.L. Bean (outlet in Freeport, Maine); and $200 cash for vacation spending money.

The prize drawing will be held on December 12.  Tickets are $5 each.  For information on how to purchase raffle tickets, please contact the NNPDF.    Click here for a printable flyer/poster about the raffle.

[Oct 19, 2009 mem]


Wisconsin Governor's Proclamation:
October as Niemann-Pick Disease Awareness Month

Nadine Hill, Wisconsin Governor Jim Doyle and Barb Vorpahl
NNPDF Director of Family Services Nadine Hill, Wisconsin Governor Jim Doyle, and NNPDF Board Chair Barb Vorpahl

Governor Jim Doyle signed a proclamation declaring October 2009 as Niemann-Pick Disease Awareness Month in the State of Wisconsin.  The proclamation was made on behalf of Barb and Gary Vorpahl of Fort Atkinson, together with Senator Scott Fitzgerald.  The Vorpahls' daughter, Stacey, died of Niemann-Pick Disease Type C in October of 2004, at the age of 19.

To read the full press release, click here.

[Oct 19, 2009 mem]


Bachman-VanDyke Family and Friends Letter

Zoe Bachman

Zoe Bachman (NPA)
12/19/03 - 6/9/06


April and Russell Van Dyke and Ken and Misty Bachman of North Carolina, are sending out a Family and Friends Letter in conjunction with the 2009 NNPDF October Awareness Month.  The letter is being sent in memory of little Zoe Bachman, who passed away in 2006, at the age of 2 1/2 years, from the effects of Niemann-Pick Disease Type A.

[Sept 11, 2009 mem]



Can Tabs Collection to Raise Funds for Niemann-Pick Disease

Andrew Limer

Katie Limer
Andrew Limer (NPC)
4/27/96 - 7/27/05
Katie Limer (NPC)

Anne Moore, in memory of her cousin Andrew Limer (NPC) and in honor of her cousin Katie Limer (NPC), is collecting metal can tabs to raise money for the NNPDF.  These tabs can come from soda, beer, vegetable and fruit juices, etc.

Please email Anne for the address of where to mail your can tabs.

[Sept 11, 2009 mem]



Periwinkle "Persevere" Wristbands, Silent Auction & Benefit, and
Family and Friends Letters Raise Awareness and Funds

Sheila and James Rogers of Salem, South Dakota, together with their family and friends, are selling NNPDF Persevere wristbands and distributing brochures to raise awareness of NPD and funds for research and family support services. 

The wristbands are proving so popular that the Rogers quickly exhausted their original supply and requested more.  A friend who is a waitress is helping sell wristbands to restaurant patrons, a friend who runs a convenience store is selling them from the checkout counter, and older children of the family are selling the wristbands to friends at school and sporting events.  The Rogers are finding that not only are people buying the wristbands for one dollar apiece, they are generously donating extra for the cause.

A silent auction and benefit is planned for Sunday, October 18, with donations of items being accepted from local businesses and individuals. The benefit will be held from 12:00 - 4:00 p.m. at the Sioux Falls American Legion.

Sheila is planning a bake sale for Friday, October 30, from 4:00 - 8:00 p.m., at Salem United Church.  Persevere wristbands will also be on sale there.

The Rogers family is also participating in the NNPDF's 2009 October Awareness Family and Friends letter campaign to raise awareness and funds.  Sheila and James are the parents of 17-month-old Tristian Norton-Rogers (NPA). 

(Note:  We are sad to report that Tristian passed away on Monday, September 21st.  Our deepest sympathies go to the Rogers family in this difficult time.)

Persevere wristband Tristian Allen Norton-Rogers
Periwinkle-color Persevere wristband
Back of wristband has the NNPDF Web site address. Each wristband is individually packaged with an insert card thanking the donor and giving the NNPDF Web site address.
Tristian Allen Norton-Rogers (NPA)

Please note:  We have a new supply of wristbands, with both Youth and Adult sizes available.  Families interested in selling wristbands as a fundraiser should contact the NNPDF.

[Sept 11, 2009 mem]


October Awareness Month Proclamation and Family and Friends Letter
White-Richardson Family

Brian Simon, Tylor White-Richardson and Jenn Richardson

Brian "Sy" Simon, Tylor White-Richardson, and
Jenn Richardson

Jenn Richardson and Brian Simon of Dubuque, Iowa, are requesting a governmental proclamation in recognition of October as National Niemann-Pick Disease Awareness Month, in honor of 13-year-old Tylor White-Richardson (NPC).

In addition, they are sending out Family and Friends letters as part of their recognition of October Awareness Month.

[Sept 11, 2009 mem]


Brubaker Family and Friends Letter and Events to Raise Awareness and Funds

Mark, Terri and Mitchell Brubaker
Mark and Terri Brubaker, with son Mitchell Brubaker (NPC), age 20

Mark and Terri Brubaker of Simi Valley, California, will send out a Family and Friends Letter in conjunction with the 2009 National Niemann-Pick Disease Awareness Month.  The letters are being sent in honor of their son, Mitchell Brubaker (NPC).

Also, the Brubakers are planning "Cans for a Cure," a collection of aluminum cans and plastic water bottles, for October 30 and 31, from 8:00 a.m. to 5:00 p.m., at the Simi Valley Walmart parking lot, to raise funds and awareness.

The Golden Spoon Yogurt stores in Simi Valley, Thousand Oaks, Agoura and Newbury Park, will make a donation for each purchase made on October 16 and October 18, for patrons who mention the Niemann-Pick Disease Fundraiser.

Stella and Dot Jewelry consultant Lisa Sepe will donate 15% of the proceeds from her sales during October.  Visit www.stelladot.com/lisasepe, click "find your hostess," and type in Terri Brubaker's name.

To visit the Brubaker's blog click here.

[Sept 11, 2009 mem]


Ty Quandt's 13th Birthday
Toscano's
Puyallup, Washington
Sunday, September 27, 2009

Birthday cake

Mark your calendars! Sunday, September 27th - Ty Quandt's 13th birthday celebration dinner at Toscano's in Puyallup (4:00 pm - 6:30 pm). Twenty percent of the proceeds will go to the National Niemann-Pick Disease Foundation! Hope to see you there!!

[Sept 4, 2009 mem]


St. Germain Family and Friends Letter

Kaiden St Germain
Kaiden St. Germain

Sharla St. Germain of Canada is sending out a Friends and Family Letter in honor of her son, Kaiden St. Germain.  Kaiden is still undergoing testing in what has been a difficult diagnostic process.

[Sept 25, 2009 mem]


Traxler-Lowry Family and Friends Letter

Callie Traxler
Callie Traxler (NPC), age 24

Tom and Sandi Lowry and Terry Traxler of Shelbyville, Illinois, will recognize 2009 October National Niemann-Pick Disease Awareness Month by sending out a Family and Friends letter.  This letter will go out in honor of their daughter, Callie Traxler (NPC), and in memory of Belinda Lee Robbins, who passed away in 1971 at the age of 11, of NPC.

[Sept 11, 2009 mem]


Vorpahls Request Governor's Proclamation in Wisconsin

Barb and Stacey Vorpahl
Barb Vorpahl and
Stacey (NPC) 1/3/85 - 10/9/04

Barb and Gary Vorpahl, parents of Stacey Vorpahl (NPC), have requested Wisconsin Governor Jim Doyle to proclaim October as Niemann-Pick Disease Awareness Month.  Stacey passed away in 2004 at the age of 19.

[Sept 25, 2009 mem]


Evening of Stars
Grand Sierra Resort
Reno, Nevada
Saturday, October 3, 2009

Paul Salos, a Frank Sinatra-stylist singer who made it through as a Top 10 contestant America’s Got Talent during the fall 2008 season, will perform on October 3, 2009, at the Grand Sierra Resort in Reno, Nevada, as part of the "Evening of Stars."  Salos, who has been working as Frank Sinatra stylist for approximately 40 years, will join Nevada Entertainer of the Year and ICONMAN musical impressionist Greg London, along with 5-year-old singing sensation Kaitlyn Maher.

These outstanding vocal entertainers will perform to raise awareness of Niemann-Pick Disease and as a fundraiser in support of the Addi and Cassi Hempel Fund.

Tickets for this event are on sale now.  Click here  for more details.

[Sept 8, 2009 mem]


Cruise for Adam
Sunday, October 4, 2009
12:00 - 4:00 p.m.
Farmersville Elementary School
Easton, Pennsylvania

Adam Recke in sportscar
Adam Recke (NPC)

The Easton Area Corvette Club, in conjunction with the Farmersville Elementary School, will host the annual Cruise for Adam event from 12:00 noon until 4:00 p.m. on Sunday, October 4.  Corvettes and other makes and models of cars will be on display -- all cars are welcome! 

There will be kids' activities, food (including a bake sale), music, 50/50 drawing, Chinese auction, etc. 

$5 per car donation appreciated, with proceeds benefiting the Race for Adam Foundation and the NNPDF.

For more details, including directions to the school, click here.

[Aug 26, 2009 mem]


Texas Hold 'Em Poker Tournament
Saturday, October 10, 2009
VFW Post #5789, Lee's Summit, Missouri

Brisan and Parker Stults
Brisan and Parker Stults (both NPC)

A Texas Hold 'Em Poker Tournament will be held on Saturday, October 10, to benefit Brisan and Parker Stults (both NPC).  The tournament will be held at the VFW Post #5789 in Lee's Summit, Missouri. 

Doors open at 5:00 p.m., with tournament play beginning at 6:00 p.m.  Brisan and Parker are sons of Mike and Jennifer Stults, and big brothers to Duncan.

For more information about the Poker Tournament visit http://www.bripardun.com/Thank-You.html.

[Nov 4, 2009 mem]


Cisneros Family and Friends Letter

Malayna Varela
Malayna Renee Varela (NPA/B)
5/31/01 - 7/22/07

Jessica and Israel Cisneros of Yuma, Arizona, will participate in October National Niemann-Pick Disease Awareness Month by sending out a Family and Friends letter in memory of Malayna Renee Varela (NPA/B), who passed away at the age of 6 in 2007.

[Sept 14, 2009 mem]


Katlyn Sumbad Memorial Golf Tournament
Modesto, California
Saturday, October 10, 2009

Katlyn Sumbad
Katlyn Sumbad (NPD Type A/B)
4/8/06 - 11/24/08

The Sumbad-Pruneau family is organizing their third annual golf tournament to benefit NNPDF for 2009 October Awareness Month. The event will be a 4-person scramble at Creekside Golf Course.  There will also be a raffle, silent auction, and contests and prizes.  The entry deadline is September 25.

Click here for the flyer with all the details of the golf outing.

[June 15, 2009 mem]


Minde-Redcrow Family and Friends Letter, Jewelry Party, etc.

Tessa Minde and Warren Redcrow of Hobbema, Alberta, Canada, parents of 15-month-old Tehyez Minde (NPA), are sending out Family and Friends letters during October to raise awareness and funds to help fight NPD. 

A friend of Tessa's also hosted a 5th Avenue Jewelry Party at her workplace, and as the hostess, she was entitled to 15% of the profit, which she donated in honor of Tehyez.

The school where Tessa works is planning to do a fundraiser, as well, and Tessa is in contact with a local newspaper about doing a feature story on Tehyez and Niemann-Pick Disease.

Tehyez Minde
Tehyez Minde (NPA)

[Oct 6, 2009 mem]


Cardinal Family and Friends Letter, Mayor's Proclamation, and Persevere Items Sales

Damon Cardinal
Damon Cardinal (NPA)
12/26/06 - 4/16/08

Elsa and Delainy Cardinal of Alberta, Canada, will again mark October Awareness Month with a Family and Friends Letter in memory of their son, Damon Eli Cardinal.  Sixteen-month-old Damon lost his battle with Niemann-Pick Type A in 2008.
Alexis and Renee
Renee and Alexis, raising money and
awareness for NPD

Alexis Cardinal, sister to Damon, and her friend, Renee, set out to raise $100 in memory of Damon, going door to door handing out brochures, sharing about Damon, and collecting donations from the sale of Persevere water bottles and wristbands. 

Proud mom, Elsa Cardinal writes, "Although they were discouraged at first with a lot of "no's" they PERSEVERED and raised over $40 within an hour. Both girls were smiling proudly and since then another friend has joined them to try and sell the last items they have in their bag. Alexis and my 2 oldest boys are also looking forward to handing the letters I ordered to their classmates on friday. Alexis plans to take water bottles to school as well and ask for donations from her classmates to help her fulfill her goal."

Further, the Cardinals, together with Tessa Minde and Warren Redcrow (parents of 15-month-old Tehyez (NPA)) requested Edmonton, Alberta Mayor Stephen Mandel, to proclaim October as Niemann-Pick Disease Awareness Month in the city.  See the proclamation here. 

[Sept 30, 2009 mem]


 

Hrbacek Family Activities

Emily Hrbacek and Brownie Scout Friends
Emily Hrbacek (NPC) (front row, center) and
Brownie Scout Friends

Laura and Scott Hrbacek of Eureka, Missouri, are raising awareness of NPD this October by sending a letter to their family and friends, and raising funds by collecting donations for wristbands and window clings in honor of their daughter, Emily Hrbacek (NPC).  The Hrbaceks also make NNPDF vinyl banners (pictured above), and donate a portion of the proceeds to the NNPDF.

Elizabeth and Sarah Corbett raised money selling cookies and lemonade while vacationing in Canada with their family.  Proud grandma Carmen Battagin ("Baba" to the grandkids) sent us the check with a sweet note, writing,   "...their inspiration was their little friend Emily...we are all very proud of their donation.  We hope, and they do, too, that it will help to find a cure soon!"

Girl Scout Troop #4805, under the leadership of Lisa Corbett, also made a generous donation to the NNPDF in honor of Emily Hrbacek.

[Oct 7, 2009 mem]


Richardson Family and Friends Letter and Hair Cut-a-Thon

Richardson children
Richardson children (Ty White-Richardson (NPC), center)

Ryan and Jill Richardson of Galena, Illinois, are sending out a Family and Friends letter in honor of 13-year-old Tylor White-Richardson (NPC), to mark October Niemann-Pick Disease Awareness Month.

Jill, a stylist at Opalus Hair Salon, is also donating a portion of the proceeds from all appointments between 3-6 p.m. on Fridays in October.  To make an appointment, call 563-556-9080.

[Sept 22, 2009 mem]


Third Annual Dillon Papier Charity Golf Tournament and Silent Auction
Friday, October 16, 2009
Hollow Creek Golf Club
Middletown, Maryland
Registration 9:00 a.m.

Dillon Papier
Dillon Papier (NPC)

Golfers, donations, volunteers and sponsors are being sought for participation in the Third Annual Dillon Papier Charity Golf Tournament scheduled for Friday, October 16 in Middletown, Maryland.  This event is being held in honor of 6-year-old Dillon Papier (NPC), the son of Mark and Darrile Papier.   Proceeds will benefit the NNPDF.

For complete details and a registration form, please click here.  To view auction items or place an advance bid, click here.

In other Papier family news -- a couple of Dillon's "girl friends" (not to be confused with "girlfriends," which few 7-year-old boys would admit to having) held their own book sale to benefit NPD.  They gathered books, priced them individually, and conducted the sale completely of their own accord.  Dillon's mom, Darrile, said the girls were "absolutely amazing" in their diligence and dedication to the cause.  :-)

Also, Dillon's Cousin Debbie and Kent Doxzon celebrated their 35th wedding anniversary recently.  In lieu of gifts, they asked everyone to pitch in for a donation to NNPDF in honor of Dillon's 7th birthday!  This gift was kept a surprise from Dillon's family, and what a nice surprise it was!  Almost $1400 came to the NNPDF in honor of Dillon as a result.  Thank you, and congratulations to the Doxzons!

[Oct 6, 2009 mem]


Harvest of Hope Dinner
Saturday, October 17, 2009
6:00 p.m.
Valley View Winery
Applegate Valley, Oregon

Harvest of Hope Dinner Ticket

The Hadley family invites you to join them on Saturday, October 17th, 2009, at 6:00pm, for a wonderful fall evening of delicious food, wine, and fabulous entertainment!   The event will be held at the Valley View Winery in the beautiful Applegate Valley of Oregon. For more information and to make your reservation, visit the Hadley Hope Web site. 

[Sept 3, 2009 mem]


3rd Annual Walk-a-Thon
Saturday, October 24
9:00 am.
Woodville, Alabama

Riley Corbitt

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

The Woodville SGA is sponsoring the Third Annual Walk-a-Thon in memory of Riley Corbitt, who lived in Woodville and attended Woodville School.  The Woodville School student body and community knew Riley as a happy, always-smiling little girl, and they will honor her memory by walking to raise money for research into Niemann-Pick Disease.

Click here to see the flyer for the Walk-a-Thon.

[Sept 28, 2009 mem]


1st Annual Food Fest
Don's Seafood Hut, Gonzales, Louisiana
Saturday, October 24
10:00 a.m. - 3:00 p.m.

Michael Landry
Michael Landry (NPC)
6/22/82 - 4/16/08

Don's Seafood Hut in Gonzales, Louisiana, will host a Food Fest featuring fried catfish, red beans and rice, to raise money for NPD in memory of Michael Landry (NPC).  Michael passed away in 2008, at the age of 25.  Michael was the son of Maureen Landry of Prairieville, Louisiana.

[Sept 28, 2009 mem]


October 2009
National Niemann-Pick Disease Awareness Month

Easy ways to get involved:
Niemann-Pick Disease Awareness FaceBook Page

GoodSearch ~ Internet Browser

United Way and Combined Federal Campaign Employee Contributions

(Tax ID #:  35-1844264; CFC Application #:  10121)

Amazon.com ~ You buy - we benefit!

Thank you to the many families who are participating in
2009 NPD October Awareness Campaign! 

Click here for more information on October Awareness Month

[Sept 11, 2009 mem]


Hudson - Cardinal Wedding

Cardinal family Cutting the wedding cake Damon Cardinal
The Cardinal Family
Elsa and Delainy Cardinal
Damon Eli Cardinal
12/26/06 - 4/16/08

Elsa Hudson and Delainy Cardinal recently married, with wedding photos taken by Jenny Alston of Imajen Portrait Art.  Jenny donated her photography fee to the Canadian Chapter of the NNPDF in memory of the Cardinal's son, Damon Cardinal.  Damon passed away at the age of 16 months, in April of 2008, from Niemann-Pick Disease Type A.

Congratulations to the Cardinal family, and Thank You to Jenny Alston for supporting NPD research and support services for families like the Cardinals!

[Sept 23, 2009 mem]


Family and Friends Picnic/Party/Fundraiser
Hop Brook Lake Park
Naugatuck, Connecticut
Saturday, September 19, 2009

Judy DeSouza's annual Family and Friends Picnic and Fundraiser in memory of Bryanna DeSouza (NPC) will be held Saturday, September 19.

The event will include raffle baskets, can/bottle deposit donations, kids games, and much more. Attendees will have the opportunity to order Avon products, Party Lite candles, and Southern Living at Home products, all benefiting NNPDF and the Quest for a Cure.

Bryanna DeSouza
  Bryanna Scribner DeSouza (NPC)
1/20/92 - 12/5/06

[June 17, 2009 mem]


Hunter's Hope Memorial 13th Annual Drive for the Cure
Golf Tournament and Auction
Friday, September 18, 2009
Shotgun Start 1:00 p.m.
Hanging Rock Golf Club
Salem, Virginia

Hunter Ozmer

Hunter Ozmer (NPC)
6/7/85 - 1/3/08

The Thirteenth Annual "Hunter's Hope" Memorial Golf Tournament and Auction fundraiser to benefit the National Niemann-Pick Disease Foundation will be held on Friday, September 18.

The $100.00 Hunter’s Hope tournament package includes golf cart, greens fee and awards dinner, a special Hunter’s Hope golf shirt, 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. on September 18, with the awards dinner and auction beginning at 6:00 p.m. under tents next to the clubhouse.

Entry forms can be obtained from www.huntershopememorial.com, or by emailing ozmer@verizon.net, or by calling 540-774-0944.  Entry forms must be received by August 21st to guarantee golf shirt size.

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 (www.huntershopememorial.com). 

View a slideshow in memory of Hunter Ozmer.

[Aug 26, 2009 mem]


Craig J. Geiger Memorial Golf Tournament
Saturday, September 12, 2009
Willowbrook Golf Course
Catasauqua, Pennsylvania

To benefit the Race for Adam Foundation


Adam Recke
Adam Recke (NPC)
The Craig J. Geiger Memorial Golf Tournament is an annual fundraiser focusing on charity and scholarship.

Craig was a 1992 graduate of Whitehall High School and standout baseball player.  He was a veteran of the Blue Mountain Baseball League.  Craig had been a private contractor for the United States Military working in many Middle East nations.  In July of 2007, Craig unexpectedly passed away.

Friends of Craig assembled upon his passing to find a way to give back to him and his family.  The Craig J. Geiger Memorial Golf Tournament was started in 2008 as a means to establish a college education fund for his daughters. 

Craig’s family, along with the organizing committee, decided that this tournament could impact the lives of others beyond Craig's daughters. Thus the tournament was renamed The Craig J. Geiger Memorial Golf Tournament. All proceeds from the tournament will be redistributed into a $1,000 college scholarship awarded to a Whitehall High School senior baseball player, with the remainder issued to the "Race for Adam Foundation."

For more about this event, click here. For more information about Adam Recke (NPC) and the Race for Adam Foundation, click here.

[Aug 26, 2009 mem]


United Way/Combined Federal Campaign Training Event
Amarillo, Texas
Friday, September 11, 2009

Andrew Limer

Katie Limer
Andrew Limer (NPC)
4/27/96 - 7/27/05
Katie Limer (NPC), age 4
First day of school

Thad Limer, father of Andrew and Katie Limer, and Bill Limer, the children's grandfather, will represent the NNPDF at an Amarillo-area United Way/Combined Federal Campaign training event on Friday, September 11.   They will give a brief presentation about Niemann-Pick Disease and the work of the NNPDF, and then staff a table to answer questions and distribute brochures and newsletters.   Thank you, Thad and Bill!

[Sept 9, 2009 mem]


"Glory Days" Dining for Dollars
Fundraiser in Honor of Dillon Papier
August 1 - 31, 2009
Glory Days Grill
Bowie, Germantown, and Frederick, Maryland

Dillon Papier and Friends
Dillon and Friends
When you dine at a Glory Days Grill during the month of August, the restaurant will contribute 10% of your total food purchases to the National Niemann-Pick Disease Foundation.  Simply ask your server for a copy of your guest check (not credit card receipt) and mail the guest check receipt to Darrile Papier, 9741 Royal Crest Circle, Frederick, MD, 21704.  

www.glorydaysgrill.com "Your Neighborhood Gathering Place"

[Aug 5, 2009 mem]


Orioles Baseball Benefit in Honor of Dillon Papier
Sunday, August 30, 2009
Oriole Park Stadium
Baltimore, Maryland

Dillon Papier and Brian Roberts
 Brian Roberts and Dillon Papier, age 6 (NPC)
Come and help celebrate Dillon's 7th birthday by sharing his love of baseball, while supporting the fight against Niemann-Pick Disease Type C (NPC). 

This special outing includes your game ticket, dining/drinks/beer in the exclusive Camden Club, sports memorabilia silent auction, and possibly a special Orioles guest appearance prior to the game, all for only $40 per person.  Proceeds will benefit the National Niemann-Pick Disease Foundation and research into treatments and a cure for NPC.

For all the details, including how to reserve your tickets, check out the complete Orioles Benefit for Dillon flyer/poster.

For more information about Dillon's battle against NPC, visit www.DillonsFight.org.

[Aug 10, 2009 mem]


Raffle to Benefit the NNPDF in Honor of Dillon Papier
Saturday, August 29, 2009
9:00 a.m. - 1:00 p.m.
Gold's Gym
5728 Buckeystown Pike
Frederick, Maryland

 

Dillon Papier and friends

Gold's Gym is hosting a raffle to raise money to benefit the fight against Niemann-Pick Disease in honor of seven-year-old Dillon Papier (NPC).  Prizes include a 20-session personal training package valued at $2000, and many more prizes including Foster's Grille gift certificates!   Raffle tickets are one for $5, or three for $10.

Click here for a printable flyer about the raffle and open house event.  Contact Kim at Gold's Gym at 443-745-5906 for more information.

[Aug 17, 2009 mem]


Tomorrow's Hope

Tomorrow's Hope Walk Fest
August 21 - 22, 2009
Jefferson High School Track
Jefferson, Wisconsin

Tomorrow's Hope is a supporter of the NNPDF.  To join a team or for more information visit Tomorrow's Hope's Web site at www.tomorrowshope.org.   Watch this site in the coming weeks for more details.

[April 22, 2009 mem]


Hope for Aaditya Group Raises Awareness and Funds
at India Day in Novi, Michigan
August 16, 2009

India Day   India Day
     
Duriya Lakdawala, aunt of Aaditya Ravi Dasgupta (NPC), wrote to let us know of her family's involvement in the annual India Days celebration, where they worked to raise funds and awareness of Niemann-Pick Disease:

"India's Independence is celebrated here in Suburban Detroit every year by having a parade and coming together as a community. It is filled with tastes, sounds and sights of India. There was live music, excellent dance performances, food and entertainment!  There were many booths of Indian jewelry, clothing, and food, among which was a booth for Hope for Aaditya that we had for our fundraiser.  We sold shirts, caps, drawstring bags, lightly used and donated Indian clothes and did henna tattos for $5.  Given the state of the economy we did not do as well as we had hoped but raised $850.  It was however a lot of fun and a lot of people are more aware of what Niemann-Pick Type C Disease is."

[Aug 21, 2009 mem]


Rebecca Roberts and Mark Jurgela Wed
Bridal Couple Honors Memory of Bride's Sister

Becky Roberts and Mark Jurgela Wedding Party

Roberts - Jurgela Wedding Party
Spring 2009

Rebecca Roberts and Mark Jurgela were married on April 24, 2009.  In memory of Rebecca's sister, Erin, the couple made a donation to the NNPDF in lieu of wedding favors. 

Erin Roberts passed away in 2004, at the age of 24, from the effects of Niemann-Pick Disease Type C.  Rebecca and Erin are the daughters of NNPDF Board member Holly Roberts, and her husband, Mike, of Hanover, Massachusetts.

Congratulations to the newlyweds, and thank you for your continued dedication to our Quest for a Cure!

[Aug 17, 2009 mem]


Fundraising Finances Our "Quest for a Cure"

Every fundraiser, large or small, advances our Quest for a Cure, and we appreciate everything our Foundation members and friends are doing all over the country (and the world!) to raise funds for research into treatments and a cure! 

Bryanna Scribner DeSouza
Bryanna Scribner DeSouza (NPC)
1/20/92 - 12/5/06

NNPDF supporter Judy DeSouza, mother of Bryanna Scribner DeSouza, sent the following letter to share some fundraising ideas and encourage families who may have not given fundraising a try.  As Judy points out, not every fundraiser has to be an elaborate, gala affair.

Hello my NPC Family,

I thought I would share with you some of the fundraising ideas I have had lately.  I am always trying to come up with new different ideas to help contribute our fundraising in behalf of the NNPDF.  While many of us including myself may not feel comfortable putting on a wonderful gala or huge event, we (including myself) can always contribute what we can.

On Sept 19th this year in Naugatuck,CT, I am holding another family/friends fundraising picnic. I have reserved an outdoor covered pavillion at the park just down the street from my house. Invited many to come and bring their family/friends and bring their own picnic foods. Grills would be provided and if they wanted to make anything for the sharing food table, they could.  Free to come. 

I asked a few friends of mine who have consulting businesses - one sells Avon and one sells Party Lite Candles to come if they were interested and donate a part of their sales to the NNPDF.  Also, planning to have some $1.00 chance raffle baskets which a few people have donated to me and for the rest of the baskets - I am now looking at clearance areas of stores for great items to make up more raffle baskets. 

I also decided to launch a new business as a Southern Living At Home consultant and for a starter kit of $199 which includes sample products , catalogs, order forms, I signed a contract for 1 year to give it a try.  It is something new for people in Connecticut and so I thought it might be interesting to try it.  My assigned sponsor consultant that I am working under is in New Jersey.  25% of sales are your profits to do what you want with it along with free products for hosting a party.  You can be a host and consultant at same time by giving the party yourself if you want to.   I can not afford in this economy not to take some profit from my business, so I will give a portion of the % on my income on a regular basis to the NNPDF.  On Sept 19th, since it is a fundraising event specifically for the NNPDF - I am giving my whole 25%.  

To start - I am going to just hand people the catalogs which have the products and specials for that month and then place one order within a couple of weeks and that will be equal to 1 party until I start to get bookings.  Products are shipped to the hostesses address for distribution, so I can even have bookings in surrounding states if I want to.  Since as a hostess, I will receive free products based on sales at each party, I am able to use those free products to raffle off to also raise money for NNPDF.  Just some ideas I wanted to share if some are having trouble trying to think of something. 

The headquarters is in Birmingham, Alabama, and the home business consulting was started in 2001 based off of the Southern Living Magazine interest.  It is a Division of Time, Inc.  They have consultants all over the USA and it is a growing business. If anyone is interested in learning more, I can connect you with my consultant.

Or maybe you can just go to the web site of SouthernLivingathome.com to find a consultant near you or see their products.

Just ideas - or you can become an independent consultant for any direct sales - make an income or side extra income and at the same time give a percentage to the NNPDF on a regular basis.   

Looking forward to connecting with my NNPDF family at the conference in Seattle this year.

You are all in my prayers.
Judy Desouza
Connecticut

[June 15, 2009 mem]


Ride for Adam
Benefit Poker Ride and Picnic
Saturday, August 15, 2009
Allentown, Pennsylvania

Adam Recke
Adam Recke (NPC)
age 10 years

The W. Casey Stengel Trucking company will sponsor the annual Ride for Adam Poker Run and Family Picnic on Saturday, August 15.  This event, being held in honor of Adam Recke, will benefit the NNPDF and further research into treatments and a cure for Niemann-Pick Disease. 

Click here for more details as they become available, and for pictures from last year's event, which raised over $50,000!

[June 4, 2009 mem]


Zumbathon Fundraiser in Honor of Dillon Papier
Saturday, August 8, 2009
2:00 - 4:00 p.m.
Gold's Gym
Frederick, Maryland

Dillon and Zumba Crew Zumba Dancers
Dillon and the Zumba Instructors! The ZUMBA Workout!

Urbana Dance Studio invites you to enjoy an afternoon of Zumba, the hottest new Latin dance-exercise craze, on Saturday, August 8th, from 2:00 - 4:00 p.m. at Gold's Gym, 5728 Buckeystown Pike, Frederick, MD.  The cost is only $10 per person and all proceeds will be donated to the National Niemann-Pick Disease Foundation.

Attendees will have fun doing something healthy for themselves while making a difference by supporting vital research toward finding a cure for NPC.

To reserve your spot at the Zumbathon, call Urbana Dance Studio at 301-874-4367, or email Sonja or Kim at urbanadance@urbanadance.com. 

For a printable flyer about the Zumbathon, click here.

[Aug 5, 2009 mem]


Frederick Keys Baseball Benefit
Sunday, July 26, 2009
6:00 p.m.
Frederick, Maryland 

Dillon Papier and the Urbana Dance Troupe Dillon Papier and Matt Tucker of the Keys Baseball Team
Dillon Papier and the Urbana Dance Troupe
at the Frederick Keys Baseball Event
Dillon Papier and Matt Tucker of the
Frederick Keys Baseball Team

Enjoy a ballgame with friends and family on July 26, and join the fight against Niemann-Pick Type C (NPC) disease.  Come early and play catch on the field!  Enjoy spectacular fireworks following the game.  Reserved seat tickets are only $10.  For full details, check out this flyer.

This event is being sponsored in honor of Dillon Papier, son of Mark and Darrile Papier. By sharing in Dillon's love of baseball, you will be making a difference by supporting vital research for treatments and a cure for NPC.

[June 15, 2009 mem]


American Cruisers Chapter 45 (Alabama)
Poker Run in Memory of Riley Corbitt
July 25, 2009

Riley Corbitt Riley and friends
Riley Corbitt (NPC)
7/27/02 - 10/29/08
Riley and friends from the American Cruisers Chapter 45 of Alabama

The last Saturday of July has been designated as the annual Poker Run Motorcycle Ride in memory of Riley Corbitt. This ride is sponsored by the American Cruisers Chapter 45 of Alabama, with proceeds benefitting the NNPDF. Please watch this space for more details as they become available.  The motorcycle club has also dedicated a page of their Web site to Riley.

[May 27, 2009 mem]


Walk-a-Thon Fundraiser
Saturday, July 18, 2009
Kicking Off at 7:00 a.m.
West Temple Community Park
Temple, Texas

Gregorio Martinez III
Gregorio "Tutu" Martinez (NPA)

Eric Martinez of Temple, Texas, is busily organizing a Walk-a-Thon fundraiser in honor of his two-and-a-half-year-old nephew, Gregorio (Type A).    Eric is gathering financial donations, gift certificates, etc, and is recruiting volunteers to help run the event.  He solicited a local company to display a colorful electronic billboard featuring his nephew's darling picture to promote the walk.  A local cheerleading group is planning to do its part to "fire up" the walkers, and hot dogs and refreshments will be served, among other attractions.  Over 200 walkers have already registered in advance for this awareness and fundraising event which will benefit the NNPDF.

The Temple Daily Telegram ran this article about Gregorio and the upcoming walk-a-thon.

[July 16, 2009 mem]


Tastefully Simple Online USA Fundraiser
(Products can be delivered anywhere nationwide)
July 6 - 10, 2009

From July 6 - 10, Judy DeSouza will host an online Tastefully Simple fundraiser to benefit the NNPDF in memory of her daughter, Bryanna DeSouza.  Twenty-five percent of the sales (100% of the consultant's commission) will be donated to NNPDF. 

The products will be shipped directly to you, the purchaser, within the US.  Orders must be placed only via the link available from Judy, in order for the proceeds to benefit NNPDF.  (Purchases made through the Tastefully Simple Web site will NOT go toward the NNPDF donation.) 

Please email Judy at bryannadesouza@sbcglobal.net and she will send you the link.

Thanks to both Judy and to Tastefully Simple Team Manager Mike for your generosity and support!

Bryanna DeSouza
Bryanna Scribner DeSouza (NPC)
1/20/92 - 12/5/06

[June 17, 2009 mem]


Emily Hrbacek to Serve as "Police Chief for the Day"
July 4, 2009

                                    
Emily Hrbacek
Emily Hrbacek (NPC)
Age 9 years

The Eureka, Missouri, Police Department is planning a very special Independence Day celebration for 9-year-old Emily Hrbacek (NPC).   At the local holiday gathering, Emily will be the guest of honor, designated as Police Chief for the Day, complete with her own friends and family as her "posse."

A member of the Police Department described some of their plans for the event (excerpted): 

"The festivities we (Eureka Police Department) have planned would begin at 7pm on the 4th of July...

We will have a designated spot for Emily's family and friends for the celebration.  This spot will include a pop up tent, a few tables for food, chairs, and this will be marked off with yellow police tape.  This spot will be close to the stage...

Emily will be designated "Emily Police Chief for the Day".  Emily will have a polo type shirt that will have the Eureka Police badge embroidered on the shirt.  Emily will be given 10 t-shirts that she can designate to whomever that will read "Emily's Police Crew".  Afterall, a Chief has to have someone to delegate to....The food and drinks are being donated by local businesses. 

A short presentation will take place about 7:10 pm or so.... Fireworks are due to start at 9:30 pm.   A few minutes before the fireworks start, Emily will need to be by the stage for the countdown.  Emily will be assisting in this!!!! 

We want to make Emily's fourth of July VERY special.  I hope this will help do just that!"

NNPDF brochures and newsletters will also be distributed at the event, raising community awareness of Niemann-Pick Disease.

Have a great time, Emily! 

[June 23, 2009 mem]


6th Annual Erin Roberts Memorial
Hanover 5-K Road Race and Walk
Saturday, June 27, 2009
Hanover, Massachusetts

The Roberts Family  Erin Roberts
Holly, Mike and Becky Roberts Erin Roberts (NPC) 4/5/80 - 12/1/04
Hanover Road Race  Hanover Road Race
   

The 2009 Hanover 5-K Road Race & Walk will take place on Saturday, June 27, beginning at 9:00 am. This great event benefits the National Niemann-Pick Disease Foundation, and your support as a sponsor or entrant is greatly appreciated!

Visit the Hanover Chamber of Commerce Web site for sponsorship forms and registration forms.

[May 18, 2009 mem]


Ryan Richardson Memorial
American Legion Post  75 Poker Run
Saturday, June 27, 2009
Crestview, Florida      

    
Ryan Richardson
Ryan Richardson (NPC)
5/27/00 - 10/18/05

A poker run ride will be held on June 27, by the Sons of the American Legion Post 75 in Crestview, Florida.  This event is being held to raise funds for the NNPDF in memory of little Ryan Richardson (NPC), the son of Chris and Sherry Richardson.  

Click here for a flyer with all the details.  Read about Ryan's Run in the Crestview News Bulletin here.

[June 2, 2009 mem]


Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction
Saturday, June 27, 2009
Spring Creek Golf Center
Cold Spring, Wisconsin

                                                                Stacey Vorpahl

Stacey Vorpahl (NPC)
(Read Stacey's inspiring story)
I

Barb and Gary Vorpahl will host their annual Golf "FORE" Stacey Memorial Classic Golf Tournament and Silent Auction on Saturday, June 27, in memory of their daughter, Stacey, who passed away in 2004 from the effects of Niemann-Pick Disease Type C.  This event will benefit the National Niemann-Pick Disease Foundation to support research into treatments and a cure for Niemann-Pick Disease. 

Here is the Golf "FORE" Stacey Registration Flyer.

Click here for a list of silent auction items.
Please note that the silent auction list will be updated as additional donations are received. Anyone interested in placing a bid on an item may email the bid to Gary and Barb Vorpahl at bvorpahl@charter.netby June 27th, the date of the golf outing. Your bid will be placed as a “sealed bid.”  If no one outbids you, the item is yours for the amount you submitted.

Vorpahl Family 2008

The Vorpahl Family at the 2008 Golf "FORE" Stacey Memorial Event

[June 3, 2009 mem]


Stephanie Yates and Andrew Brown Wed
Memorial Donation Made in Lieu of Wedding Favors

Stephanie and Andrew wedding photo

Stephanie and Andrew Brown
December 5, 2008

Stephanie Yates and Andrew Brown were recently united in marriage.  In lieu of favors for wedding guests, the couple made a donation to the NNPDF in memory of Stephanie's brothers, Jeffery and Zachary, who both passed away from the effects of NPC.

A photo of JJ and Zack was placed at the greeting table, and a scroll with this message was laid at each place setting.  Proud mom Melissa Yates wrote:  "Though some found it teary, it was a great tribute to our boys and hopefully put the thought of those that were 'missing' with us in spirit.... She was a beautiful bride and is a wonderful young lady…….she helped me take care of our boys and is now a pediatric nurse practioner taking care of other beautiful children……"

Congratulations, Stephanie and Andrew, and thank you for your generous gift!

[June 26, 2009 mem]


7th Annual Alex and Laura Vaughan Memorial Golf Tournament
Saturday, June 20, 2009
Stone Tree Golf Club, Owen Sound, Ontario, Canada
11:00 a.m.

 
Alex and Laura Vaughan
Alex Vaughan, NPC
NPC4/18/88 - 12/23/92
Laura Vaughan
1/16/95 -11/8/01

This golf tournament will be 4-person teams, Best Ball format.  The $100 fee incudes 18 holes of golf, power cart and dinner, along with a chance to win exciting prizes.  Hole sponsors, raffle prize donations and monetary donations are also being solicited in support of this event.Proceeds will benefit the Canadian Chapter of the National Niemann-Pick Disease Foundation. 

Click here for more information, including a registration form and sponsorship/donation form.

A note from Tammy Vaughan, mother of Alex and Laura, and Chair of the Canadian Chapter of the NNPDF, about the 2009 Vaughan Memorial Golf Tournament:

Thanks to our friends, family, and the generous businesses throughout Canada and the US, we will be contributing another $24,000 to research to find a treatment and cure for Niemann-Pick Disease.  This brings our 7 year total to over $159,000!

Every year I am literally overwhelmed by the amazing support that we receive – you guys are simply the best – what more can we say but THANK YOU, THANK YOU, THANK YOU.

The rain poured right up until tee-off time, but our little angels were looking out for us and the rain stopped at 10:55 am - leaving us dry for the remainder of the day.  From what I have heard rain surrounded the area so I think that Stone Tree actually got some special treatment!

Once again, thank you from the bottom of hearts for your support and your generous contributions to this cause that is so important to us.

See you next year on the 19th of June!

Allan, Tammy and Michael

Look to this day
For yesterday is but a dream,
And tomorrow merely a vision.
But today, well lived,
Makes every yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well, therefore, to this day
 

[June 22, 2009 mem]


"Tee Times Fore Ty"
Saturday, June 20, 2009
Lake Spanaway Golf Course, Tacoma, WA

Update -- For a fun recap of Tee Times Fore Ty, watch this slide show.

Registration at 12:00 p.m.

Ty Quandt

Ty Quandt (NPC), age 12

A golf tournament will be held on Saturday, June 20, at Lake Spanaway Golf Course, Tacoma, Washington, to benefit the National Niemann-Pick Disease Foundation.  Tee Times Fore Ty is being held in honor of Ty Quandt, who is affected by Niemann-Pick Type C (NPC). This will be a four-person scramble, with registration of $80 per person including greens fees, cart, lunch, t-shirt and prizes.

Click the links for the event Poster and Registration Form.  The deadline to register is June 1st.

[June 25, 2009 mem]


2009 Lee King Benefit Bass Tournament
Saturday, June 13, 2009
Lakepoint State Park
Lake Eufaula
Eufaula, Alabama

This fishing tournament is held annually in honor of Lee King (NPC), son of Jimmy and Melissa King, of Eufaula, Alabama.

Jimmy, Lee and Melissa King

Jimmy and Melissa King, with Lee (NPC), age 18

Visit www.leekingbenefit.org for more details, entry forms, sponsorship information, tournament rules, etc.

[May 19, 2009 mem]


Curwood Festival
Owosso, Michigan
Saturday, June 6, 2009
2:00 - 4:00 p.m.

Lindsy Vyskocil will raise funds and awareness for Niemann-Pick Disease at the Curwood Festival on Saturday, June 6, with a creative "living art" project.  Lindsy has recruited a group of friends who will be "bronzed" and dressed as Greek mythology characters, posing as statues. 

Lindsy will use the opportunity to distribute NNPDF newsletters and brochures, and sell Persevere wristbands.  Lindsy, a relative of the Heinze family of Elsie, Michigan (who have been affected by NPD), is focusing on Niemann-Pick Disease as her senior project for school.

(The Curwood Festival celebrates Owosso's own James Oliver Curwood, a prolific and successful author and environmentalist. Curwood built a Nordic-style castle in Owosso where he had his writing studio, and several of his books were later made into films.)

We will look forward to photos from this event!

[June 4, 2009 mem]


Annual Family Fun Niemann-Pick Awareness Day
"Ducks for Bucks"
June 6, 2009
Turley, New Mexico

                  Dainty Duck Dash rubber duckie race

Jami and Lisa Chavez host an Annual Family Fun Day fundraiser/awareness event in memory of their daughter, Breann, who passed away in 2006 at the age of three from the effects of NPC.  "Ducks for Bucks" features the "Dainty Duck Dash" rubber duckie races, horse rides, carnival games, clowns, face painting, and kids' bouncy attractions.  Also, there will be raffles, a silent art auction, live music, food, wine-tasting, and more, so the adults can have as much fun as the kids!.

Rubber Duckies in beachwear Woman and child on horse
"Beach Duckies" -- just a small sample of the many darling duckies available for racing in The Dainty Duck Dash.  Need not be present to win, and first place has a $1000 prize! Horse rides at the Annual Family Fun Day.

Visit the Annual Family Fun Day pages for much more information.  Check out the awesome array of decorated ducks you can sponsor in the race, and you need not be present to win!  Each duck is only $5, and you might win the first place prize of $1000! Sponsor one duck or an entire flock, and support the fight against Niemann-Pick Disease.

Breann Chavez The Chavezes support the NNPDF in many ways, including the Equipment Exchange program, the Family Support and Medical Conference, and the beautiful memorial candles sent to our member families, which are also available for purchase here.
Breann Chavez (NPC)
2/10/03 - 6/8/06
 

[May 21, 2009 mem]


"Pennies from Heaven to Help an Angel"
The Parish of Saint Catherine of Siena
Trumbull, Connecticut

The Religious Education students of the Parish of Saint Catherine of Siena collected Lenten offerings and made a generous donation to the NNPDF in honor of Naomi Tyrrell, age 6 (NPC).   

                                                                          Naomi Tyrrell

     Naomi Tyrrell (NPC), age 6 years

[June 9, 2009 mem]


Baysox Benefit in Honor of Dillon Papier
Sunday, May 31, 2009
2:05 p.m.

Papier Family with baseball bat

Darrile and Mark Papier with son Dillon (NPC)

Enjoy a ballgame with friends and family on May 31st at the Bowie Baysox Stadium and join the fight against Niemann-Pick Type C (NPC) Disease.  Come early and "Meet the Team."Dillon Paper (NPC), age 6, LOVES playing and watching baseball! 

Please come and join in the fun, while raising funds to fight this devastating disease. 

Tickets are $14, with half the price being tax deductible.Click here for a flyer with all the details of this fun event.

[April 21, 2009 mem]


 School Popcorn Sale
Eureka Elementary
May 22, 2009

Emily Hrbacek and NNPDF Banner

Emily Hrbacek (NPC), age 9

Eureka Elementary School in Eureka, Missouri, is planning an in-school Popcorn Sale fundraiser for May 22, in honor of Emily Hrbacek, age 9.   Proud parents Scott and Laura Hrbacek made the colorful NNPDF banner which will be used at the fundraiser and at future events.

Foundation member families who are interested in having a banner made for their events should contact the NNPDF Central Office at nnpdf@nnpdf.org.

[April 9, 2009 mem]



Naomi's Night
Friday, May 22
8:00 p.m. - 12:00 a.m.
The Roma Club
100 Front Street
Bridgeport, Connecticut
$25 per person

Naomi Tyrrell and bunny

Chris Lancia is organizing a get-together for the over-21 crowd in honor of Naomi Tyrrell.  The event will benefit the NNPDF. It promises to be an evening with incredible food and drink, musical entertainment and raffles..

Naomi will be there for a short time-- so come out for food, fun and to support Naomi!

For more information, visit this Facebook page .  (Facebook login may be required.)

Naomi Tyrrell (NPC), age 6  

[May 19, 2009 mem]         


             

"Let's Kick Niemann-Pick"
Field Goal Kicking Contest
 Sunday, May 17th, 2009

Referee signaling touchdown

A field goal kicking contest in honor of Adam Recke and to benefit the NNPDF will be held at Salisbury Middle School, Allentown, Pennsylvania, on May 17th. (Rain date - Sunday, May 31st.)  T-shirts will be given to all participants registered by April 25.  Categories for Men, Women and Children.  Prizes are First Place - $100 and a trophy; Second Place - trophy; Third Place - trophy.

For complete details, rules, and the registration form, click here.

[April 21, 2009 mem]


"Kevin's Walk-for-Life"
Saturday, May 16, 20
Newport News, Virginia

Kevin Eadie

Kevin Matthew Eadie, NPC
12/24/93 - 11/12/08

Kevin's Walk-for-Life is being planned for May 16 at 9:00 a.m., at scenic Newport News Park. Participants will choose between a paved 2-mile trail or a 3.5-mile nature trail for their walk or fun run. Early registrations (by May 2) are $15.00, and $20.00 after May 2.  Participants are encouraged to solicit additional sponsors, with any size donation gratefully accepted.

This fundraiser will benefit the Kevin Eadie Foundation in its mission to find a cure for Niemann-Pick Type C.  Please visit the Kevin Eadie Foundation's Web site at www.helpkevin.org for more information or to register online, or click here for more information and a brochure about the walk/run.

[April 6, 2009 mem]


"Race for Adam"
5K Run/Walk for a Cure

April 25, 2009
Allentown, Pennsylvania

Runners line up at the start 2009 Race for Adam
Runners get ready to run the 2009 Race for Adam.  The tall young man in sunglasses in the right foreground of the picture ultimately won the race. Adam Recke (NPC), age 10, stands with his dad, Sean Recke, at the 2009 race. Matt Tobias, President of the Race for Adam Foundation, speaks at the microphone.

The 2009 Race for Adam event was held April 25, in Allentown, Pennsylvania.  The annual race, in honor of Adam Recke (NPC), ten-year-old son of Sean and Amy Recke, is held to raise funds and awareness for a cure for Niemann-Pick Disease.   The event also offered entertainment including children's games and a band.

For more pictures and to read one runner's account of the race, visit Bob D's blog here.  Many thanks to Sarah (age 11), for her photos, above.

[April 28, 2009 mem]


"Surf's Up!"
Family Dance Night and Silent Auction

Friday, April 24, 2009
6:30 - 8:30 p.m.
Mt View Elementary School Gymnasium
Edgewood, Washington

This family event was sponsored by the Mt View PTA and ASB in honor of Ty Quandt (NPC).   Dancing, a silent auction, snacks, photos, and much more were enjoyed by those in attendance. 

We DARE you to try and sit still when you see (and hear) this slide show from Surf's Up!   :-)

Proceeds benefit Ty Quandt and the National Niemann-Pick Disease Foundation. View the event flyer here. 

Check out this article by Neil Pierson, posted by The Herald of Puyallup, Washington, about Ty and the Surf's Up! event, and this article by Clare Jensen in the Milton Edgewood Signal.

Ty Quandt and mom Karen Quandt

Ty Quandt, age 12 (NPC), with mom, Karen Quandt

[April 30, 2009 mem]


Bowl-a-Thon Family Event

Friday, April 24, 2009
Galena, Illinois

Ryan and Jill Richardson sponsored a family bowl-a-thon event in honor of their son, Tyler (NPC) to raise funds for the NNPDF.

[April 28, 2009 mem]


Sumbad Family Marks Birthday with Awareness Mailing

Genesis and Jennifer Sumbad and Katlyn

Genesis and Jennifer Sumbad with daughter Katlyn (NPD Type A/B)

April 8, 2009, would have been Katlyn Sumbad's 3rd birthday.  Sadly, little Katlyn passed away last November from the effects of Niemann-Pick Disease Type A/B. 

Katlyn's parents, Jennifer and Genesis Sumbad of Modesto, California, are honoring Katlyn's birthday with a memorial letter to their family and friends as a means of raising awareness and funds for research. Please click here to read the Sumbad's message.

The Sumbads are also already busy planning their annual Niemann-Pick Disease Charity Golf Tournament to be held this fall.

Once again, we extend our most sincere sympathy to the Sumbads, and we thank them for their dedication to advancing research so that someday, no parent will lose their child to NPD.

[April 28, 2009 mem]


Raiden's Hope Benefit
Open Fishing Tournament

April 11th, 2009
7 a.m. - 4 p.m.
Claytor Lake
Dublin, Virginia

Come and fish, or sign up to be a sponsor/donor of this fishing tournament being held in honor of Raiden Linkous (NPC).

Raiden Linkous and his dad, Dwayne Linkous

Raiden Linkous, age 12 (NPC), and his dad, Dwayne Linkous

The Lunker Pot is a Humminbird 798C SI Combo and a $400 Bass Pro gift card -- total value $1400!

For more information, visit Raiden's Hope, or see the tournament flyer here.

[Feb 16, 2009 mem]


"Revenge of the 80's"
A Night Out Against Niemann-Pick

Saturday, April 4, 2009
6:00 p.m.
Spencer's (Main Street, Chaumont, New York)
$10 at the door

1980's Rocker Dude

Pull out your acid-washed jean jacket and leg-warmers and join in for a night of fun and fundraising in support of families in their journey to find a cure for Niemann-Pick Disease.

The evening's events will include a costume contest, raffles, drink specials and plenty of entertainment.  Music provided by DJ Derek.

Click here for a printable flyer promoting the event.

[March 4, 2009 mem]


Champion Martial Arts Center

West Chester, Pennsylvania

In honor of their good friend, Adam Recke (NPC), members of the Champion Martial Arts Center worked during March to raise awareness of Niemann-Pick Disease.  Donations to the NNPDF were collected to support the fight against NPD.  Thank you!

Adam Recke

Adam Recke (NPC), age 10

[April 15, 2009 mem]


Who Inspires You?
Vote Daily from today until March 31st, 2009
In support of the National Niemann-Pick Disease Foundation

http://www.whoinspiresu.ca/whoinspiresu/whoinspiresu.html

Vote for:  Marchella Mafrica ~ Video # 11

Dear NNPDF Families and Friends,

I am writing because I was hoping you may be able to help me do something which would really benefit the National Niemann-Pick Disease Foundation.

A friend of mine entered a video contest called "Who Inspires You." Her name is Marchella Mafrica and she has entered the contest in hopes of winning and donating the Grande Prize of $10,000 to the National Niemann-Pick Disease Foundation on behalf of myself, Mariarosa Martino (NPD Type B). Her submission is about me and she has made the cut-off into the top 20 videos. In order for her to win she must obtain the most votes. I was wondering if there are foundation members who may be interested in voting to help her achieve her goal in winning the grande prize and donating the money to the foundation. I am hoping you can help!

The website where people can vote is:

http://www.whoinspiresu.ca/whoinspiresu/whoinspiresu.html

Vote for:  Video #11 ~ Marchella Mafrica

Thank you so much!!

  Mariarosa Martino (NPD Type B Adult)

[022709 ~ nmh]


8th Annual Life for Luke Dinner Dance and Silent Auction Gala

Saturday, March 7, 2009
Riviera Banquet Hall and Conference Centre
Ontario, Canada

Lucy and Enio Liegghio, parents of Luke Liegghio (NPC), hosted the 8th Annual Life for Luke Dinner Dance and Silent Auction Gala on March 7th.  Sponsors and donations were solicited for the event.  Proceeds will be divided between The SickKids Foundation and The Canadian Chapter of The National Niemann-Pick Disease Foundation. Click here for more details.  The SickKids Foundation and The Canadian Chapter of The National Niemann-Pick Disease Foundation wrote letters of support for the event.

Luke Daniel Liegghio

Luke Daniel Liegghio (NPC)
5/5/97 - 6/10/05

[Nov 18, 2008]


Yankee Candle Fundraiser

March 5 - 20, 2009

Judy DeSouza held a Yankee Candle fundraiser to benefit the NNPDF, in memory of her daughter, Bryanna DeSouza (NPC).

br28 (32K)

Bryanna Scribner DeSouza (1/20/92 - 12/5/06) and her mom, Judy DeSouza

[Feb 23, 2009 mem]


Rare Disease Day Banner

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives. 

Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.  People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.

Papier Family at the baseball game

Mark and Darrile Papier with their son, Dillon (NPC).

Niemann-Pick in the National News as a Rare Disease

Niemann-Pick Disease was the subject of a CBS News segment which aired March 1st, featuring the Papier family of Frederick, Maryland.   
 
Mark and Darrile Papier are the parents of Dillon, age 6, who is affected by Niemann-Pick Type C.  The Papiers are members of the NNPDF, and Darrile recently joined the Foundation’s Board of Directors.  
 
To view the segment, visit:

http://www.cbsnews.com/video/watch/?id=4836925n&tag=main_home_MediaBox.
 
Please view the link, post your comments, and forward the link to your family and friends.  Our goal is to make Dillon’s segment the most-viewed story on the CBS Web site.  

If enough interest is shown in the segment, perhaps CBS will do a more in-depth story and help raise awareness of our quest for a cure! 

How you, as an NNPDF member, can get involved!

[March 3, 2009 mem]


Philadelphia Phantoms vs. Providence Bruins (Boston Bruins affiliate)
Fundraiser Sponsored by Race for Adam Foundation

Saturday, Feb. 28, 2009 at 7:05 p.m.
The Wachovia Spectrum

For more details, visit:  Phantoms vs. Bruins Fundraiser

Adam Recke

Adam Recke (NPC), age 9 years

[022709 ~ nmh]


Niemann-Pick Benefit Silent Auction and Concert

Saturday, January 24, 2009
5:00 - 9:00 p.m.

College of Southern Nevada -- Nicholas Horn Theatre

Ty in Tuxedo with the Ladies

Ty Quandt, age12 (NPC), and Friends at the Benefit

Nearly $8,000 was raised for Niemann-Pick Disease research at this event, held in honor of Ty Quandt, son of Gene and Karen Quandt of Edgewood, Washington.  Thank you to all who participated to increase education, awareness, and funds for research!

[March 4, 2009 mem]


Massanutten Resort One-Week Getaway Vacation Raffle
to Benefit the National Niemann-Pick Disease Foundation

Drawing held January 5, 2009

Located in the heart of Virginia's Shenandoah Valley, the Massanutten Resort is a first-class resort offering skiing, tubing, snowboarding, hiking, biking and golf, depending on the season. The resort also offers a waterpark, racquetball, fitness centers and much more. Raffle tickets are available for the chance to win a one-week stay at the Massanutten during 2009. The raffle is being held to benefit the NNPDF in honor of Dillon Papier (NPC), the six-year-old son of Darrile and Mark Papier of Frederick, Maryland.  Proceeds will help fund research into treatments and a cure for Niemann-Pick Type C.

For more information about the raffle, click here:  Massanutten Vacation Raffle details

Dillon Papier

Dillon Papier (NPC)

[Jan 15, 2009 mem]


To read about fundraising events during 2007 and 2008, visit this page.

[Aug 17, 2009 mem]