Here’s a unique NBIA fundraiser you can take part in from home

Calling all chefs. 

As a way to raise money and awareness for the NBIA Disorders Association, shop for yourself or buy that special cook in your life a high-quality kitchen tool or some other gift from The Pampered Chef. All proceeds for this national fundraiser will benefit the NBIA Disorders Association.

During April and May, our NBIA community and everyone they know can buy kitchen tools as well as buy gifts for every occasion from The Pampered Chef by going to a special online site.  NBIA parent Sandra Leap of Haymarket, Virginia, is chairing the effort in cooperation with Pampered Chef consultant Doina Heinz who is donating all of her time and profit to this event.  

The two women enjoyed great success in September 2006 when they worked together on a cooking show fundraiser in Northern Virginia.  With contributions from just 15 participants, the show yielded almost $1,200 in sales.  Although The Pampered Chef corporate fundraising program offers a profit of 10 percent to 15 percent, the consultant donated additional funds to create a 20 percent return of almost $250.

Seeing the potential, Leap and Heinz are launching this national effort.  This time, Heinz is working at a non-profit level, so we expect close to a 40 percent return on every dollar spent.   

The money will support the association’s Research Fund.

Visit www.pamperedchef.biz/doinaheinz and select Our Products (bottom left), and under organization, enter NBIA. For questions about products and help ordering, contact Heinz at DoinaHeinz@comcast.net.

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May NBIA fundraiser in Virginia will kick off “Ride to the Wall” 

Motorcycle enthusiasts from across the country who ride to the Vietnam Veterans Memorial in Washington, D.C., May 25 can make a pit stop in Virginia to help the NBIA Disorders Association. 

The Haymarket Masonic Lodge is hosting a breakfast from 6:30 to 8:30 a.m. the morning of the “Ride to the Wall,” which is being held to honor veterans who lost their lives in the Vietnam War.  The lodge is at 6711 Jefferson St, Haymarket, Va. ( 20168 ), and the breakfast is free to all motorcyclists. 

Donations will be accepted on behalf of NBIA Disorders Association, and the lodge will match contributions up to $5,000. Members of the lodge are friends of the family of Rich and Sandy Leap, who have a daughter with NBIA. 

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Mark your calendar and join us for Sept. 22 Leap golf marathon
By Rich Leap 

It's time again for the third Queen Bee Golf Marathon. The  2008 event is set for Sept. 22 at Piedmont Country Club in Haymarket, Va. 

Last year you helped us raise the bar tremendously. The day was a great success. We invite you to join us for another fun filled day of golf and fellowship. For information on golfing, sponsorship opportunities, donation of prizes or supporting our golfers, log onto www.queenbeeworld.com or e-mail Rich or Sandy Leap at rsleaper@hotmail.com. 

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December 2007

2^nd Annual Queen Bee Golf Marathon raises $40,000 for NBIA research fund
By Rich Leap 

We learned so much from our first golf marathon that we thought the second one would be much easier and contain fewer surprises. While that certainly was true for the planning, we were pleasantly surprised by the overwhelming support from golfers and supporters who came out in October to compete at the Piedmont Country Club in Northern Virginia. 

Quest Diagnostics came on board again as the marathon’s sponsor. That ensured that 100 percent of the pledges went to the NBIA Disorder Association’s research fund. We also obtained enough prizes through local sponsors to keep the play interesting and ensure that none of the players would leave empty-handed. 

Our goal was to beat last year’s event and raise $30,000. 

Twenty-five players (23 men and two women) arrived with pledge sheets in hand. (Two other golfers, Mike Leap and John Moore, raised funds, but were unable to play this year). We had a picture-perfect day, cool to start and warming up to the mid-70s. 

My daughter, Brittany Leap, who has NBIA and in whose honor the fundraiser was held, arrived on the course to visit with all the players and encourage them. She loved riding in the golf carts while being greeted by each group. 

By the end of the day, 2,262 holes of golf had been played. Eleven golfers reached the 100-hole goal, with the average being about 90 for the day.   The day was capped by dinner and awards as a tired but supportive group vowed to compete again next year. 

Because of the tremendous work by golfers in gaining sponsors, we easily surpassed our goal, raising more than $40,000 for NBIA research. The support for Brittany, the event’s Queen Bee, and NBIA continues to amaze us. 

We have so many people to thank: Peg Sherwood, for creating and donating the Hole Sponsor signs; Thom Wood for taking photos all day; the golfers, sponsors, volunteers and prize donors. All of their efforts help lead us closer to a cure. 

Thanks also to:
Queen Bee Sponsors 

Marathon Sponsor
Quest Diagnostics 

Hole in One Sponsor
Solid Foundations 

Hole Sponsors
Applied Foundation Testing
Mark & Jayelene Betonti
CDR Fundraisiing
C.J. Coakley Co., Inc.
Cupka’s Café II
Steve Dawson & Robin Firestone
Fraternal Order of Eagles #76
Mark Gorga
Bob Guiney
Judy Leap
Todd & Josette McMichael
Allen & Cynthia Melton
Nicos Café – Pittsburgh. Pa.
North Texas Soccer Association
Gary & Sharon Paul
Piedmont Carpet & Upholstery Care
RC Agency
Redbeards – Pittsburgh. Pa.
Sonny’s Place – Pittsburgh. Pa.
The Hearts of Mt. Washington Group
The Mt. Washington Boys
Visio Consulting 

Breakfast Sponsor
Starbucks 

Closet to the Pin Sponsors
Pittsburgh Police – Paramedics River Rescue
Pittsburgh Police – SWAT Team 

Prize Sponsors
American Tap Room – Atlas Walk Way, Gainesville, Va.
Valerie Balsar
Cold Stone Creamery – Atlas Walk Way, Gainesville, Va.
Family Dental Care – Gainesville, Va.
Foster’s Grill – Haymarket, Va.
My Haberdasher Custom Made Shirts – Haymarket, Va.
Panera Bread – Atlas Walk Way, Gainesville, Va.
Papa John’s – Leaberry Way, Haymarket, Va.
Piedmont Country Club
Qdoba – Atlas Walk Way, Gainesville, Va.
Quest Diagnostics – Chantilly, Va.
Red Fox Inn – Middleburg, Va.
Regal Cinemas – Manassas, Va.
Ron Raglin
Shopper’s – Gainesville, Va.
Starbucks – Atlas Walk Way, Gainesville, Va.

Golfers Pictured: Chris Prestera, Kevin Humphrey, Rich Erikson, Rich Leib, Mike Knapp, James Penn, David Waits, Florinda Russell, Rich Leap, Frank Wood, Brenda Godwin, Kevin Rollison, Neil Russell, Jay Portnoy, Tom Huard, Chris Kase, Mitch Russell, Chad Cutlip, Sid Vikram, Jim Nix, Michael Menn, Dean Updegrove Not Pictured: Bryan Firestone, Rob Seamen, Rick Phillips

Volunteers Pictured: Samantha McDade, Teresa Markham, Heather Porter, Peggy Gough, Robin Firestone Not Pictured: Nadine McDade, Judy Leap, Michelle Ayala

Family Masquerade Ball nets $2,500 for NBIA
By Josie & Elly Corrado 

We got into the Halloween spirit and ended up raising $2,500 for NBIA by finding a fun way to support our friend, Brittany Leap of Haymarket, Virginia who was diagnosed with NBIA in 2006. 

The money will go to NBIA's research fund to help find a cure for the disease. 

The event was a Family Masquerade Ball held Oct. 20. Not only did it feature a costume party for the entire family, it included a DJ, dancing, a craft table, games and a raffle. Raffle prizes included something for everybody: Dolls, books, DVD’s, a DVD player, restaurant gift certificates, games, dental services,  goodies for golfers, and our “big” item was a signed script from the cast of “Hanna Montana!” 

We also designed T-shirts and bracelets to sell, and Father Peffley of Holy Trinity Catholic Church demonstrated his talent for juggling bowling balls and even machetes!

The Methodist Church in Gainesville donated its hall for the event, and many local businesses donated prizes. Food came from Papa John’s Pizza , Harris Teeter and Bloom Grocery stores. 

The entire Corrado family was involved in the project: parents, Colleen and Rick, along with Josie, 11; Elly, 9; Biaggio, 7; and Lia, 3. 

Event sponsors were:
Bloom Grocery Store
Mrs. Ginger Carroll
The Corrado Family
EmbroideMe
Gainesville United Methodist Church
Giant Foods
Harris Teeter Grocery Store
Holy Trinity Catholic Church
Keller Williams Realty
The Leap Family
Papa John’s Pizza
Safeway Foods
Shoppers Food 

Raffle prize donors were:
American Tap Room
Ms. Lee Beaver, Keller Williams Realty
Mrs. Ginger Carroll
Cold Stone Creamery
The Corrado Family
Dental Care of Gainesville
Fosters Grille
The Leap Family
Ledo’s Pizza
Miley Cyrus and the Cast of “Hanna Montana”
Qdoba Mexican Grill
Ruby Tuesday
Subway
The Little Gym
The Palate Wine Bar and Grill
Uno Chicago Grill

Masquerade Ball in Gainesville, Virginia organized by Josie and Elly Corrado. Front row: Brittany Leap, Lia Corrado Back row: Elly Corrado, Josie Corrado, Biaggio Corrado

Birthday Fundraiser

Dear Ms. Wood,
 
Last year, my brother Biaggio (7), my sisters Elly (9) and Lia (3), and I, Josie (11), decided that instead of gifts for our birthdays, we would ask people to donate to NBIA instead. It went so well, that we did the same thing this year. 

We are thrilled to send $700 for your continuing research into finding a cure for this disease. We know that $700 could buy a lot of toys and presents, but you see, we also know Brittany Leap (who has NBIA). Because she is our very good friend, we know that no present is more valuable than her presence. So, we are happy to be able to do something to help someone who means so much to us.
 
Thank you for everything you do in your work to find a cure for NBIA. May God continue to bless you.
 
Sincerely, 
Josie, Elly, Biaggio, and Lia Corrado
Gainesville, Virginia

Biaggio Corrado, Brittany Leap, Elly Corrado and Josie Corrado. The Corrados live in Gainesville and Brittany lives in Haymarket, Va.

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Students help raise money for NBIA by presenting check to classmate
By Kim Patterson 

On the day he received a citizenship award from his school, my son Ben received something else he won't forget from his friends at Simon Intermediate School in Conway, Ark.: $530 to donate to NBIA. 

Classmates, teachers and staff decided in February they wanted to do something to raise money and awareness for NBIA, which affects Ben. They launched the "Pennies for Ben" campaign, and each day, students placed daily offerings of pennies and spare change in large water jugs to raise money for research. 

Before school let out for the year, an awards assembly day was held, and Ben was called to the stage to receive not only the citizenship award but also a presentation to show how much he is loved at Simon Intermediate. Principal Larry Joe Smith presented Ben and our family a check for $529.94 for the NBIA Disorders Association Research Fund. 

We were deeply touched by the rousing round of applause and standing ovation Ben received. We also were moved that the school wanted to help those affected by NBIA find answers to their disease. 

We are forever grateful to Simon Intermediate.

Ben Patterson, 12, from Conway, Ark., receives check for NBIA research from Simon Intermediate School.

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Pizza fundraiser nets $1,200 for NBIA’s research fund
By Kim Patterson 

The Conway (Arkansas) High School football team and its’ boosters club found a way to thank a supporter who had done a lot for the team but refused to be paid. The beneficiary was the NBIA Disorders Association. 

The boosters wanted to thank my husband, Bill, for his volunteer work the past several years as the team's photographer at many of the sporting events. He also took the senior football group picture and made a collage for each senior player for senior night. He didn't ask for anything in return except that those who could afford it donate to NBIA. 

So, the boosters organized a fundraiser at the Pizza Inn in Conway Feb. 6, in honor of my son Ben who is 12 and was diagnosed with NBIA in 2003. All tips and 10 percent of buffet sales went to the NBIA Disorders Association Research Fund. We collected approximately $1200 to put toward the search for a cure. 

We got the word out through announcements at our church, work and school, and with e-mails to friends in the community. Most of our very large Sunday school class at Grace Methodist Church was there to support us, along with people we work with and friends in the community. 

One of the organizers, Cathy Lloyd, called a Little Rock TV station. One of the reporters came to do a story on Ben and the fundraiser.  We were on their 9 p.m. newscast and a video was available online. 

A special thanks to Cathy and organizer Elaine Sherwood. Cathy and her family are members of the Conway High School Boosters Club who came up with the idea for the fundraiser. Thanks also go to members of the Conway High School football team who assisted in waiting tables and serving drinks to patrons. 

We hope the fundraiser and the TV story will raise awareness for NBIA. When Ben first was diagnosed, we thought, "What can we do to live day to day?" Now as we go along we have started thinking,  "What do we need to do to raise awareness and raise money for research?"  We are now taking those steps.

Volunteers at the Pizza Inn fundraiser in Conway, Arkansas with Ben Patterson, who has NBIA. First Row: Kel Clarke Second Row: Corey Vaughan, Ben Patterson, Chris Franco Third Row: Kerry Scroggin, Brandon Blackwood,  Seth Sherwood, Nathan Farris, Grant Blaylock

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Christmas party raffle raises $720 for NBIA
By Anabela F. Baribiero

Every year the union at the school where I work as a teacher's aide adopts a charity at our annual Christmas party. This time, the workers at Rosendale Elementary School in Niskayuna, New York chose to support NBIA. It was the school my daughters, Sabrina and Alyssa, had attended. 

Co-workers Evelyn Dreyer, Pat Sweeney and Diane Nappi took time out of their busy days to organize the charity event, which raised $720 for NBIA. They remember my daughters and handled most of the logistics. 

They helped with the raffle of gift baskets donated by staff members from five elementary schools, two middle schools and one high school. All of the proceeds went to NBIA. 

Evelyn Dryer, Pat Sweeney and Dianne Nappi from Rosendale Elementary School in Niskayuna, New York.

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Cincinnati fundraiser brings in $10,000 to help support 2007 family conference 

By Susan Laupola 

A dinner and silent auction in Cincinnati netted $10,000 for the NBIA Disorders Association and launched the 2007 NBIA Family Conference on a healthy path. All of the proceeds from the fundraiser will go toward the conference, which also will be held in Cincinnati. 

The fundraiser was organized by NBIA Disorders Association board members Mary Tapke and Susan Laupola. Board president, Patty Wood, was in attendance at this first fundraiser held in her hometown Oct. 21. 

For the $20 price of admission, participants feasted on a lasagna dinner and a large assortment of homemade desserts. They also bid on silent auction items, bought raffle tickets on a variety of gift baskets and took chances on our grand prize electronics drawing which included an IPOD, DVD recorder, and multi-phone set. Throughout the evening volunteers sold split-the-pot tickets, NBIA 10-year anniversary cookbooks, T-shirts, and pins. We also had so many donated desserts that our MC even began to auction them off.  

Although we were not fortunate enough to have any NBIA children or adults present, we know they were with us in spirit. A table was set up with NBIA posters, newsletters, and brochures and a DVD was shown during the evening that gave our guests a chance to see the wonderful families they were there to support. The DVD was narrated by Patty Wood who told us the names and hometowns of each of the individuals as they went by on the screen. Many thanks to Patty and Davida Strauss for putting this DVD together in time for the event. 

It could not have been such a success without the generosity of our many donors.  Individuals who have no connection to NBIA (or in fact have never even heard of the disease) were more than willing to support it. Private donations covered our food expenses, raffle items, hall rental, liquor license fee and all of our auction items and gift baskets. 

As anyone who has held a fundraiser knows, it takes several dedicated individuals who are willing to give many hours of their time to plan and organize such an event. Mary and I would like to give special thanks to all of our family and friends who joined us on this occasion and especially to our fellow organizers: Gail Kelly, Vicky Stapleton, Patty Bunke, Gary Hampton, and Gina Moore — we couldn’t have done it without them! 

We would also like to thank our volunteers who either helped in the kitchen, assisted in decorating the hall, provided wonderful musical arrangements, sold raffle tickets, served drinks at the bar, took pictures or helped in other ways: Diane Murdock, Tony Venuto, Diane King, Sarah King Tamsuhkin, Melanie Seta, Sam Laupola, Katie Laupola, Max Laupola (and his girlfriend Ashley), Derek Scott, Ed Kelly, Alex Moore, Anna Bunke, Melissa Farrell, Holly Kahles and Ron Stapleton. 

Finally, thanks to our master of ceremonies  —  Richard Kelly. His unique sense of humor and generosity had everyone entertained until the last minute and all were pleading with us to hold the event again next year (which we definitely are considering).

Master of ceremonies Richard Kelly congratulates Mary Tapke on winning a raffle basket. Committee member Gail Kelly is on the right and attendee Su Truman looks on.	Patty Wood narrates video showing NBIA individuals at Cincinnati fundraiser Oct. 21.

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Fun walk engages friends and community; raises $30,000 for research grants 

By Veronica and Gaetano Bonfiglio 

Our first event fundraiser since our son, Brent, was diagnosed with NBIA in 2003 was daunting to think about, but once we got going, it far exceeded our wildest expectations. We set a goal of raising $20,000 by holding a Fun Walk at a local park in Fremont, Calif. Oct. 14, and ended up with over $30,000! 

Once before we had raised money for the NBIA Disorders Association by way of a direct letter campaign to close friends, but after reviewing the association's fundraiser package, and with guidance from Kris McGourthy and Patty Wood, we decided to try a Fun Walk. A two-mile paved path around a local lake seemed to be the perfect setting, so we sent invitations to our closest friends asking for volunteers to help organize the event. 

With helpers on board, we brainstormed and generated letters that could be customized for each business. We split up the workload and agreed to contact certain merchants for prizes and donations. We also signed up walkers and sponsors, and sold raffle tickets. We didn’t advertise in the newspaper but we distributed fliers at friends' workplaces, schools, and a few local businesses. 

We spoke to Brent's school principal who not only allowed us to set up a table during Back to School Night, but also encouraged the Merit Club to adopt the project. The kids sold ice-cream for three weeks and raised $2, 217 for the event! 

Brent's former Montessori teacher allowed the kids to sell raffle tickets for two days. We recruited high school students needing community service hours to sell raffle tickets outside our local video store. The sales were so good there we decided in the future we should sell outside other stores with lots of foot traffic for at least three or four weekends.

We wish we had started planning earlier. It took longer to get the proper permits from the city recreation department than we had thought. Also, several businesses told us that their allowance for charitable donations had been reached and we should have applied earlier. Nevertheless, we were fortunate to get wonderful prizes and contributions.

Our good friend Pilar Bonilla, who is employed by Commercial Casework Inc., rallied friends and coworkers to sponsor the event. Her wonderful boss, Bill Palmer, encouraged his employees by offering to match their donations. Their generosity translated into $4,920.

Another NBIA family, Donna, Ron and Jon Stretter joined us, all the way from the Napa Valley. It was very special to meet another NBIA family for the first time. 

We also saw friends we had not seen in a long time, and many of them stayed the whole day, enjoying snacks and many of the activities, including crafts, board games, soccer and face-painting. Play-Doh turned out to be a surprise hit with kids and adults alike. Everyone had so much fun they asked if we’d do it again next year.

We owe a debt of gratitude to our wonderful core volunteers, Gladys Adra, Paresh Bhakta, Giuseppe Bonfiglio, Pilar Bonilla, Julia Cerna, Sherry Ghassimien, Norma Iglesias, Kuldeep Kalonia, Ali & Parvaneh Kheymehdooz, Mabel Moreno, Henry Pegueros, Minnie Uppuluri and Robin Yarmovsky. 

Also, special thanks to our gold sponsors: Commercial Casework, Inc., Gifford Foundation, Santa Barbara Travel Bureau, Centerville Junior High School, Mabel Moreno & Kuldeep Kalonia; and to our Silver sponsors:  Minnie & Venkat Uppuluri, Paresh & Kuki Bhakta, Vahe Sarkiss, Behrooz Shishegar, Kami and Eva Shishegar, Trader Joe's, City Beach, and Harmonious Healing Center, Angela and Aaron Allen,
 Ignazio and Enza Bonfiglio, Meheran Ataee, Patricio and Norma Dauguet, Show and Sell Realty.

And a million thanks to all of our volunteers, merchants and walkers and their supporters.

Gaetano Bonfiglio collects pledge sheets for Fun Walk at local park in Fremont, Calif. that raises $30,000 for NBIA Research Fund.

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Queen Bee Golf Marathon raises $25,000 for research 

By Rich Leap 

One of the cardinal rules of fundraising is to build the event around something you like. Outside of family time, golf is my favorite pastime. So, we planned the Queen Bee Golf Marathon at Piedmont Country Club in Northern Virginia for Oct. 9.  

The Golf Marathon was a new concept to all who played. The goal was to play as many holes as possible (up to 100) in one day. The concept is similar to a walkathon; players get sponsors to pledge a certain amount of money for each hole played or make a flat overall pledge. Each golfer committed to try and raise $1,000. 

Part of the sponsor process was an option for a hole sponsorship. This was a very successful endeavor as every hole on the course ended up with a sponsor. We had a goal of $20,000 for the event. 

Quest Diagnostics came on board as the marathon sponsor and picked up the entire cost of the event. This ensured that 100 percent of the money raised went directly to the research fund. In addition, we were able to obtain a number of prizes for the event through local sponsors to help keep the play interesting throughout the day. 

The volunteers were out before sunrise, setting up the registration table and preparing the course for the event. They also filtered throughout the course making sure the players had enough drinks and snacks.                          

The day turned out perfectly: 70 degrees, sunny and no wind — a golfer's dream.  Eighteen golfers (17 men, 1 woman) and one clever tag team were on the course. For the tag team, four guys played 25 holes apiece to support one injured golfer who had signed up for the event. This allowed him to reach the 100-hole goal and maximize the pledges. Play began at 7:30 with twosomes on every other hole.   

During the day, my daughter, Brittany, who has NBIA, was able to make her way around the course to meet the golfers and take a photo with each group as they passed by the clubhouse. Brittany is no stranger to golf carts (she likes to ride along with me), but zipping around with her Aunt Nadine and Cousin Samantha was probably the highlight of her day. 

The golfers played diligently. By the end of the day, 1,526 holes had been played — an average of 85 holes per person. David Eliot and Kevin McDonald reached the 100-hole goal along with the tag team put together by John Moore. Dinner and awards were handed out at the end of the day, with a tired but supportive group of golfers vowing to play again next year. 

We collected more than $25,000 in pledges. The players averaged more than $1,000 each, allowing us to surpass our goal. 

Thanks to Betty Ann Senf (Eye of the Needle) for doing such a fine job with our event shirts, Peg Sherwood for creating the Hole Sponsor signs and Candice Helmlinger for designing the golfer packet. 

Also, thanks to the golfers, sponsors, volunteers and prize donors for making the Golf Marathon a great success and for contributing to our goal of finding a cure and future prevention.   

Special thanks to marathon sponsor, Quest Diagnostics; Hole-in-one sponsors, Solid Foundations; Hole Sponsors, Eye of the Needle Embroidery; Jim Joyce and Matt Malloy; Pittsburgh Police - Zone 2; Pittsburgh Police – SWAT; MaryDawn Miller; Cindy and Allen Melton; Washington Courier; Quest Diagnostics - Specimen Processing Department; Data Systems Hardware; J & K Moving and Storage; Creative Direct Response; North Texas Pan American Soccer and Tender Heart Enterprises. 

We are grateful to our volunteers, Charo Aguirre, Michelle Ayala, Debbie Files, Robin Firestone Patti Freeman, Candice Helmlinger, Judy Leap, Rita Leap, Nadine McDade Samantha McDade Casey Parker and Gine Portnoy and our prize sponsors, Red Fox Inn, My Haberdasher, Piedmont Country Club, El Tio Restaurant, Ruby Tuesday, Golf Tour Trailer, Bubbles Hair Salon, Sunnybrook Golf, Designer Fitness, Sodexho and Modell’s Sporting Goods.

Queen Bee Golf Marathon in Haymarket, Virginia Golfers Pictured: (Front Row kneeling l-r) David Eliot, Kevin McDonald, Rob Seaman, James Penn, Bob Guiney, Rich Leap (Second Row Standing l-r) Sid Vikram, Jay Stewart, Mike Leap, Chris Kase, Mitch Russell, Mike Knapp, Florinda Russell, Tom Huard, Frank Wood, Rich Erikson, Kevin Rollison, Jay Portnoy, John Moore (Not Pictured)  Mike Jones, Bruce Weyrick,  Len Vincent, Bryan Firestone

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NBIA 10^th anniversary cookbooks flying out the door like hotcakes 

The association’s 10^th anniversary cookbooks have been moving as fast as the plates at the newest trendy restaurant in town. We met our goal of selling 1,000 books in just seven weeks and faced a dilemma. How many more should we order? We settled on 300, the number of recipes in each cookbook. 

The books are here, just in time for holiday gifts for friends and family. They also would be great ways to thank the teachers, aides, nurses, hairstylists and many others on your list! 

Cookbooks with recipes provided by NBIA family and friends across the world can be purchased at our Web site at www.NBIAdisorders.org for $12. Shipping and handling costs are $3.50 per book in the United States and Canada and $11 per book anywhere else in the world. 

For orders in the United States of 15 books or more, please contact Patty Wood at pwood@NBIAdisorders.org or call (619) 588-2315 to make arrangements with no shipping fees.   

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Tykes riding their trikes raise $950 to fight NBIA 

Thanks to Wonderland Nursery School in Schenectady, N.Y., whose toddlers once again pedaled 50 laps on tricycles and two-wheelers, netting $950 this year for NBIA. This is the fourth year the school has donated to the NBIA Disorders Association through their yearly fundraiser. 

The donation is in memory of Sabrina and Alyssa Barbiero of Schenectady who both passed away in 2004. A teacher at Wonderland, Leslie Leo-August, is a friend of the Barbiero family. 

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In celebration of our 10th anniversary, the NBIA Disorders Association will be selling a special cookbook featuring favorite recipes from NBIA families and friends, starting in August. 

We are grateful to all who sent in recipes and to the families who provided paid messages and who participated in our original back cover. We also thank Lori Mitchell who donated her time and talent for our unique front cover. We would like to thank our business sponsors for their ads in the back of the cookbook, especially Speedmark Information Services, whose generosity we deeply appreciate in helping us cover our printing costs. 

We collected 300 recipes, doubling our original goal of 150 and raised enough advertising revenue to cover all but a very small portion of the printing costs.
                  
Cookbooks will be available for $12 each. NBIA families wishing to sell cookbooks as fundraising projects are asked to contact Patty Wood at pwood@NBIAdisorders.org or call her at (619) 588-2315 to arrange the details. 

Individuals or families can pre-sell books, and then we will ship the exact number of books sold after the money has been sent in. Another option is to order 15-25 books with no upfront payment required. Families have 60 days to sell the books or return them. Families are responsible for bearing the cost of shipping returned books in undamaged condition.

Families who want to sell cookbooks at other types of fundraisers should make special arrangements regarding quantity with Patty. 

In addition, the books may be bought online at our Web site at www.NBIAdisorders.org. We are now accepting credit cards through PayPal, including foreign cards (See article on pg. 12). Usual shipping and handling costs will apply, but you do not need to join PayPal to charge. 

We will also be selling NBIA logo t-shirts and pins online to help you show your support for our organization, as well as accepting donations. 

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Your simple search for information on the Internet can now raise money effortlessly for the NBIA Disorders Association. Just go to www.GoodSearch.com, and sign up saying you'd like your searches to benefit our organization. Then search to your heart's content, just like you would choose Google.com or any other search engine.

Add GoodSearch.com to your favorites list, have a toolbar, or even make it your homepage for easy access. The site is powered by Yahoo! 

Every time you use it, your search will add a penny to our organization. Even though that doesn't sound like much, it can add up. As of July 25, we had $91.76 posted to our organization, with little fanfare about the service. In December of each year, GoodSearch will mail a check to us for amounts generated above $100. 

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I recently turned 10 years old. It reminded me of birthdays past, and a friend I miss.
 
From kindergarten to second grade I went to school with a little girl named Alyssa Barbiero. She had NBIA, and is not at my school any longer. Sadly, Alyssa died in third grade.
 
When my birthday came this year, I remembered our big birthday party in kindergarten. So this year when I had my birthday party, I asked all my friends to donate money to NBIA instead of giving me a gift. With the help of my very generous friends we were able to donate $350 to NBIA Disorders Association.
 
With this gift, I hope that everyone realizes that every penny counts. I also hope it helps scientists get closer to finding cure for NBIA.
 

After our daughter Brittany Leap was diagnosed with NBIA in February, we stumbled on the NBIA Disorders Association Web site and finally found the information, direction and support we needed.  We wondered: How could we help Brittany, the association and redirect our pent-up energy?  BINGO! 

A group of friends, who would soon become our volunteer group, researched the idea, put together a list of things to do and decided our goal should be $5,000. The event would be June 9 at the Piedmont Club in Haymarket, Virginia.  

For the next month and a half, we had an outlet for our energy and the opportunity to get to know a tremendous group of people. With the help from volunteers at our church, the neighborhood and the support of others within this organization, we created fliers, recruited donors for prizes and sold tickets.  

"Queen Bee Bingo," named for Brittany, whom we call "Miss B," drew 200 people, including Piedmont residents, employees of Quest Diagnostics, parishioners of St. Katharine Drexel Mission Church and the Red Hats. The Red Hat Society is a social organization where there is fun after fifty (and before) for women of all walks of life. 

Prizes were awarded at each Bingo round, plus six door prizes and eight raffle baskets. The room was buzzing with excitement.  

The event far exceeded our goal. It raised more than $10,000 for NBIA research. 

We're so encouraged we're already planning our next NBIA fundraiser: a golf marathon to be held in the fall. The goal is try and play 100 or more holes of golf in one day. Think you're up for the challenge? If not, would you like to sponsor a golfer? Contact Rich or Sandy Leap at (703) 753-8437 or rsleaper@hotmail.com. 

Our special thanks for Queen Bee Bingo go to our Platinum Sponsors:  the Ayala Family, Judy Leap, Josette McMicheal and Geraldine Erikson.  

Thanks also to prize donors:  Judy Leap, Nokesville Print and Copy Center, Lisa Studtmann, Piedmont Carpet and Upholstery Care, Mary Kay Consultant Maria Emami, Three Fox Vineyards, Pampered Chef Consultant Belinda Greis, Jami Saucier, Ellen Sivick, Personal Consultant Heather Pillow, US Borne Books Consultant Terri McDermott, Kirk Russell, Absolute Carpet Care, Tomlinson Manor B&B, Mary Beth Barron, Taste of Home Entertainment Consultant Geraldine Erikson, CAbI Representative Melissa Upperman, Rubio Real Estate, Mary Kay Consultant Janet Dean and Piedmont Country Club.  

Thank you to Candice Helmlinger for the pictures. 

NBIA Association now accepting PayPal for
credit cards at Web site 

It just got easier to donate money and order items from the NBIA Disorders Association's Web site. 

Starting July 20, the association has begun accepting credit card donations at www.NBIAdisorders.org using PayPal. You do not have to open an account to donate using PayPal, though if you wish to, you may donate through an existing PayPal account. T-shirts, cookbooks and other items also can be purchased from the Web site using PayPal, starting in mid August. 

We believe this is a good fit for our organization. PayPal has an excellent reputation for financial dealings and the means to keep all financial transactions as secure as possible. None of your personal financial account information is shared with our organization. We will pay a fee for each transaction, but costs are significantly less than handling it ourselves. 

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Get ready to celebrate, send in recipes for NBIA association’s 10^th anniversary

By Patricia Wood 

It’s time to party, everyone. 

I know it’s hard to believe, but the NBIA Disorders Association is going to celebrate its 10^th birthday this year. That’s right. On September 23, 1996, the secretary of state of California granted the association corporation status, officially creating this organization and the Internal Revenue Service granted us non-profit status effective this same date. 

We encourage families to send us a letter or e-mail on how having the NBIA Disorders Association in your life has made a difference to you. We will be publishing some of these letters in our August newsletter, along with a picture of each family. Send to info@NBIAdisorders.org. 

We also hope you will take an opportunity to give back to an organization that for a decade has helped to connect families, educate the public and support research. Our board is asking all NBIA families and friends to hold a fundraiser sometime before the end of 2006. It can be as simple as you like or as elaborate. 

Our board can help with details and suggestions. We will have 10-year anniversary merchandise available and can help with wording for letters, fliers, etc. Just contact Patty Wood at pwood@NBIAdisorders.org or Kris McGourthy at Rural9@aol.com for assistance. 

Also, here’s a fundraising idea that’s hard to resist:  yummy family recipes—from each of you! We are going to print a cookbook with recipes from NBIA families and friends from around the world. Please send in your favorite recipes to nbiacookbook@hotmail.com and include your name, city, state and your e-mail address so we can contact you if any questions. If you live outside of the United States, please include your country. We have a form that makes it easy to participate, so if you have not already received it, please e-mail me and I will be happy to send it to you, or you can find it at our Web site. 

If your language is not English, you can submit your recipe in your native language. But if you can translate it into English, that would be great. 

Feel free to submit as many recipes as you like in a variety of categories. We plan on publishing a minimum of 150 of them and are looking for a recipe from every NBIA family, as well as their friends. 

We are using the company, Morris Cookbooks.  For more information about Morris, see www.morriscookbook.com. 

We need all recipes by May 1, 2006, so please do not delay. We need your help to make this project a success. 

We hope to have the cookbooks available by the end of July. You can order them to sell at your fundraiser, or just to co-workers, friends and family members. We will also have the option for you to get pre-sales, so you will have already sold the cookbooks and gathered the money before they are shipped to you. If you are interested in this option, please contact Patty Wood for the proper paperwork. 

We will also have advertisement space at the back of the book. Costs will be $200 for a full page ad, $100 for a half page, $75 for 1/3 page, $50 for ¼ page (business card size), $35 for 1/6 page and $15 for patron ads. Please ask businesses in your community if they would like to show their support and advertise their company. Forms for this are also available by contacting Patty. 

The books present a nice way for NBIA families who wish to pay tribute to lost loved ones, to honor someone or simply show their support to the organization. Families may also purchase space for these purposes at the above rates. 

If you have other suggestions on how we can celebrate our 10^th, please let us know. Once you decide on your fundraiser, please let our office know of your plans. Any fundraisers held before July will be featured in our August newsletter, while those after will be in a later issue. 

Let’s make our 10^th anniversary an exciting, memorable celebration.

April, 2006

West Australian airline club donates $1,000 to research 

The Interline Club of Western Australia, an organization made up of staff members of various airlines, chose the NBIA Disorders Association as its charity for 2005, and presented a $1,000 check to support the Research Fund at a function in February. 

"The Interline club is always thrilled to choose and support a charity close to Interline's heart each year with the money raised from their raffles," said Nicole Passarelli. She is a cousin of NBIA association board member Gerry Barbiero, who, along with his wife, Bela, lost their two daughters to the disease in 2004. 

Passarelli works at Consolidated Travel and helped organize a quiz night that raised $12,000 for the association's Research Fund last year. She approached her manager, Kerry Coupar, a member of the Interline club, about donating to our organization, and Coupar proposed the club adopt the NBIA Disorders Association for its charity in 2005. The club agreed, and made the donation at an event hosted by Royal Brunei Airlines at which more than 100 club members attended. 

December, 2005

Middleboro raises $3,700 for research 

By Kris McGourthy 

At first blush, it looked like bad luck was going to hijack our fundraiser. 

Papa Gino’s, our local pizza restaurant, had agreed to donate 20 percent of sales between the hours of 11:30 a.m. and 4 p.m. on Oct. 15, so we prepared fliers for the event, handing them out to friends and supporters and urging them to have lunch there that day. We were shocked when we arrived and saw a sign that said, “closed until 1:00 due to no power” on the front door. That would mean losing a huge chunk of the lunch business. 

But Papa Gino’s wasn’t going to let fate have its way. The restaurant graciously agreed to double the percentage it would donate to NBIA to make up for lost sales. We were thrilled and had a great time and wonderful turnout that day. 

We also held a raffle with donated gifts. We had great prizes, including a football autographed by Doug Flutie donated by the Brolin family; a basketball autographed by Antoine Walker; and a baseball autographed by Doug Mirabelli. We are so grateful to Papa Gino’s and the many local businesses that generously donated gift certificates, tickets and gift baskets for us to raffle. (Please see a complete list of donors below.) 

Many thanks also to the Massachusetts Striped Bass Association, which made a donation in honor of the May family, and to all the Gillette employees whose donations the company will match. 

December, 2005

Annual village garage sale raises money for NBIA 

By Pam Stromsta 

A garage sale in Shorewood, Ill. turned out to be an easy way to help the NBIA Disorders Association this spring. I decided that the annual event held in our village was a good way to raise money without involving too many people who had already done their share for our family. 

We didn’t have to put an ad in the paper because the village took care of that, so we just made fliers and posted them at various stores in the surrounding area, stating the sale would benefit NBIA and would also feature raffle tickets and a candy sale. A couple of stores donated items for the raffle, and some of the kids on the block were nice enough to sell the Fannie Mae bars left from our previous candy fundraiser. 

We also put a picture of our son, Kenny, who has NBIA, on a large can for cash donations. That way, people who didn’t want to buy anything but wanted to donate money could do so. 

The church rummage sale proved to be a handy way to gather items for the garage sale. My younger son had helped at the church sale, and we asked if we could have some of the left over clothes and some other items. The church said if we would pick the stuff up, we could have it all. We ended up with more than we could load. Neighbors also contributed when we told them what we were doing. 

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NBIA touches people near and far….

By Nicole Passarelli

It all began with a suggestion to make a donation at Christmas time to honor the lives of two young, beautiful girls, Sabrina and Alyssa, and to send an expression of love to their parents, Gerry and Bela Barbiero, as a way to acknowledge their extraordinary loss. This small suggestion sparked a big night in Australia.

We decided to hold a ‘quiz night’ to raise money for NBIA. A 'Quiz night' for those who have never heard of or attended one is a fun night, focused on teams who compete to answer questions.

A ‘quiz master’ reads out rounds of questions, (each round can have a different ‘theme’) and each team competes to get the most right answers. The one with the highest score wins the night.

With such a large family, it was never difficult to find volunteers willing to plan and organize the event. A committee was formed, and the planning meetings were fun, in addition to being a great way to catch up with family and friends who you don’t get to see as often as you’d like.

We realized early on that we needed to educate people about NBIA. There are few known cases in Australia, so it is hard to ask for donations when people don’t know what they’re being asked to help. I believe the key to our success was using the girls as our motivation. Sabrina and Alyssa were our primary inspiration, and this night was to honor them. We also knew our fundraising would benefit many. So, we designed a small brochure to create awareness of NBIA and advertise our event.

The committee members and all other family members assisted in finding prizes, venue, sponsorship and all other things that contributed to such a successful night. We started off with modest ideas, but it wasn’t long before it just grew.

I can’t begin to explain the overwhelming support, interest and generosity that we encountered. People respond when you mention ‘family’ or ‘children.’  We had overwhelming support from each and every family member and from our friends, colleagues, local communities, businesses, clubs and even a famous West Australian football player …. just about everyone we asked! For a cause that is not known in Australia, it was mind blowing to see so much support.

Most things we needed for the night were donated. Anything else that was needed, family members were happy to provide. Overhead costs were thus kept to a minimum. We initially planned on only selling approximately 30 tables, but it later became obvious we had oversold and needed to allocate more tables. I think our final total was approximately 360 people in attendance. At $10 a ticket, the entry fee was a good starting point to raising a significant amount.

Apart from the entry fee, other activities that helped us raise our total included:

• Arranging a “liquor’ license for the night so we could sell alcohol.
• Arranging raffles, and selling tickets throughout the night, while the quiz was taking place.
• Sponsorship for each of the eight quiz rounds.
• Auctions and various other games played throughout the night.

All in all, the night was a huge success and exceeded all of our expectations. We managed to raise in excess of $16,500AUS ($12,000 in U.S. dollars). It was an absolute pleasure to be a part of a wonderful cause. It was also lovely to see the entire family all come together for such a heart warming purpose.

It all began as a token gesture to show love and support for Gerry and Bela. In the end, it was Sabrina and Alyssa who touched the hearts of hundreds of people far away, in Perth, Western Australia.
 

By Julie Ardery

Impresario: (from Italian­ impresa   undertaking, chivalric deed) One who sponsors or produces entertainment.

Is there an impresario among your friends, someone who hosts the parties, organizes food, delivers to the sick and insists on holding the bashes at her house? In my gang, the impresario is Mary Ann Roser.

Mary Ann is a tough-minded but warm-hearted newspaper reporter. She’s also an NBIA board member who edits the newsletter you’re reading. Mary Ann turned 50 Aug. 15, and instead of letting her duck out of any birthday event, as she had wished, we got her to relent by making her 50th birthday party a fundraiser for NBIA.

With good advice from NBIA sharpies Kris McGourthy, Donna Helton and Patty Wood (who happens to be Mary Ann’s cousin), we decided on a bowl-a-thon. Mary Ann’s longtime chum Gretchen Heber, a web-design wizard, made an e-vite that we sent out to a big list of Mary Ann’s friends.

On August 7, we staged what our emcee Ken Herman fairly described as ‘the worst display of bowling ever seen in Williamson County.’ And we had a blast. Ben Wear and Erin McGann collected money and pointed us toward the pins. Andy Alford supplied rose cupcakes, all lit with candles for Mary Ann to wish on. She awarded a restaurant gift certificate to James Head for his top score, out of the stratosphere at 192.

To raise money, we’d considered asking all bowlers to get sponsors, but with bowler-reporters, there’s a rub. You can’t hit a local business up for a donation and then turn around and write about the same folks in tomorrow’s newspaper. Instead, bowlers paid $25 apiece for two games, and Bill Bishop and Mike Ward organized a silent auction (if you can imagine a bowling alley filled with reporters as ‘silent’).

Friends and bowlers brought items and donated them to the auction: Putlizer Prize winning editorial cartoonist Ben Sargent donated a cartoon, writer/editor Janet Wilson donated a boat ride on Lake Travis, Alford volunteered to bake a cake for someone. Some lucky person went home with a gorgeous yellow watermelon homegrown in the Texas Sand Hills by Kim Tyson Cook.

There were a few hitches: decorations chairperson Eileen Flynn sprained her ankle the night before the party but soldiered bravely on, with help from Laura Heinauer. Wear, our scrupulous treasurer, sent the checks off certified mail as directed, only to have the U.S. postal service route them every which way but El Cajon, Calif.

In all we had 78 bowlers and 10 non-bowling donors, some from as far off as California and Illinois. San Antonio made a good showing. And NBIA stalwarts from the Fuller and Rhodes family made the two and a half hour trip from Groesbeck, Texas: special thanks to Kathy, Chris, Stevi, Amy, Traci and Tyler.

We discovered that Mary Ann has a menagerie of friends, high-tech geeks, old hippies, big shots, back-to-the-landers, and of course lots and lots and lots of journalists. The afternoon was a great chance for us all to get to know each other better and to learn about NBIA. We raised more than  $3,000 and put a smile on the face of a wonderful woman.

So, who’s the impresario of your neighborhood or workplace? Maybe that social superstar would expend some shine on a fundraiser for NBIA.

August, 2005
 
Fundraising Challenge

Kris McGourthy and Bela Ferreira-Barbiero, our veteran fundraisers for NBIA, led our session on how any family can put on an effective fundraiser. They shared tips on how to orchestrate a fun event in your community, interest the press and increase public knowledge about the disease. 

Bela shared with us a letter from Mark Michalisin, a family friend who ran a triathlon in memory of Sabrina Barbiero, and who single handedly raised $10,000 for our Research Fund. His letter is at the bottom of this page. 

Bela and Kris impressed upon the families that everyone is needed to do their part if we are to continue to fund research grants in the future. They challenged every NBIA family to hold a fundraiser in the next twelve months, and we are asking those of you who have not yet done so, to consider this important step.  

Many families feel powerless to make a difference when fighting this disease. This is a powerful way to contribute and we need everyone working together to make our organization a vital part of the research process. 

Please do your part and contact us with your plans for a fundraiser. We will help with information, support and ideas – we just need you to take that first big step. 

TIPS FOR A SUCCESSFUL FUNDRAISER

1.  Pick something you will enjoy doing.

2.  Contact friends, family and others in your community to help with your fundraiser.

3. Meet regularly to plan your event; have a budget.

4. Be organized-keep names and addresses of all contacts and donors for thank you notes and future fundraisers

5.  Get everything possible donated to keep expenses to a minimum.

6.  Call newspapers, TV to create media awareness for the event and educate the public about NBIA.

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August, 2005

Letter to NBIA families

by Mark Michalisin

Good Morning.  I want to thank Gerry for inviting me to speak to you today I wish that I could be there in person with all of you. 

My name is Mark Michalisin, and I first met the Barbiero family 7 years ago when they moved into our neighborhood in Niskayuna, NY.  I was instantly drawn to Sabrina’s warm smile and Alyssa’s repeated attempts to flirt.  Back then, I had never heard of NBIA, but at that point the Barbieros became part of our lives.  Over the years our two families began doing more and more things together – going to a Barney concert, going to the circus, bowling, apple picking, and family cookouts.  It slowly became apparent that something was not quite right with both Sabrina and Alyssa.  Finally there were answers.  Great news, we finally found out what was wrong.  The bad news, it was an unknown condition with no cure thus far.  The only way to get to the bottom of this was to help raise money to fund the needed research and find a cure.  Today this is the biggest challenge we face.  That is why I am speaking to you today. 

We decided to do something that we know a lot about – eating and having fun.  Family, friends and neighbors of the Barbieros joined together in January of 2003 to begin planning a community-wide Family Fun Day, which was to be held that October.  We began passing fliers around our neighborhoods, advertising in the schools, reaching out to local businesses, as well as national businesses, for donations and sponsorships, and the response was overwhelming.  The day consisted of a family fun walk, clowns, face painting, hair braiding, a local DJ, a BBQ, and raffle drawings.  I can tell you that a lot of the money came from the raffle drawings, which included such prizes as leather jackets, gift certificates to local establishments, TVs, DVDs, and airline tickets, all of which were donated.   It was truly a community event, and we raised over $75,000, which included a $50,000 research grant from a local company.  Both Sabrina and Alyssa had a blast that day.  Much of their family and friends were there to share this special day with them.  Also sharing this special day was Cheryl Lamos and her family from East Greenbush, NY.  Cheryl’s children, Bruce, Becky, and Barbara, all of whom share this disorder, had a great time as well. 

Our next fundraising endeavor was inspired by the passing of Sabrina in March of 2004.  I wanted to dedicate something to her memory, so I decided to compete in a triathlon to raise money for NBIA research.  I contacted my family, friends, and co-workers, and once again, everyone came through.  The event was held in August of 2004 in Vermont, and Gerry, Bela, and Alyssa were there with me, along with family and some special friends.  This day was just as important to Alyssa as it was for me, so I pushed her across the finish line in her wheelchair.  The smile on her face was priceless.  I raised almost $10,000.  Again this August, I will compete in the same triathlon, but this time the girls’ Uncle Anthony and his friends will compete too.  Sadly, Alyssa will not be there with us, but along with Sabrina, her spirit will help us through.  Who knows, maybe we will see another upside down rainbow symbolizing the girls’ approval to us. 

The most recent Niskayuna-wide fundraiser was held just a few short weeks ago to raise money for a handicapped swing at the girls’ elementary school.  Again, through the community, family and friends, over $7,500 was raised.  

Unfortunately, I think we have tapped out our local monetary resources over the past couple of years. 

Each quarter, a newsletter is sent out updating each of us on the progress of NBIA research, updates on gatherings, events and the tragic loss of yet another life.  I receive these newsletters and one common theme comes across – Fundraising.  In order to further research, we need to continue to raise money.  Yet, it appears that the same group of families is spearheading the events. 

If one person can raise over $10,000, what do you think could happen if we all committed ourselves to this cause?  There are generous, warm-hearted people out there who are willing to contribute, but they are not aware of our cause.  Just imagine what can be accomplished if we pull together and commit to doing it?  It’s easy, all you have to do is ask. 

Awareness is the key to success.  All it takes is a little time and effort to make the general public aware of our cause.  Without funds, we do not stand a chance of finding a cure for this disorder.  Every little bit helps.  Set up a bake sale at school, organize a fun walk or bowl-a-thon, ask local businesses to help.  A little effort will return a bountiful of rewards.  This disorder has affected each of us in this room – either through a family member or a close friend.  My life is that much more rewarding to have been a part of Sabrina and Alyssa Barbierio’s lives, and I am committed to doing everything I can to raise awareness and funds to find a cure for NBIA. 

The goal of this discussion is to focus on the importance of fundraising.  Without it, research can not continue.  I challenge the members here today to come up with a goal for 2005 and commit to achieving it.  Each and every one of us needs to take the responsibility to do their part.  Together, we can achieve not only our goals but continue the research to find a cure for NBIA.  Thank you for your time and commitment to a worthwhile cause.

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August, 2005

Tikes riding trikes raise $925 for NBIA

Three- and four-year-old children from Wonderland Nursery School in Schenectady, N. Y., pedaled 50 laps on tricycles and two-wheelers, netting $925 in May for NBIA. The Bike-a-Thon was dedicated to the memory of sisters Sabrina and Alyssa Barbiero of Schenectady, who died of NBIA last year. 

The Barbiero girls’ father, Gerry Barbiero, is a member of the NBIA Disorders Association board. A teacher at Wonderland, Leslie Leo-August, is a friend of the Barbiero family and the wife of one of Gerry’s co-workers at Schenectady International and she recommended that this year’s Bike-a-Thon be dedicated to the Barbiero girls and NBIA. 

Wonderland began as a Cooperative Nursery School and is a family program of child and adult activities: a cooperative workshop in human relations where parents, children and teacher learn to live, work and play together. Each year, the 51-year-old school chooses two worthy causes to help with the Bike-a-Thon fundraiser. It has donated to NBIA Disorders Association for the past three years.  

April, 2005

Second Annual Scotch Doubles Crazy Bowl Raises $6,000 for NBIA research fund

By Donna Helton 

What’s a fun, easy way to raise thousands of dollars for NBIA and honor a loved one at the same time? Put on a night of bowling, coupled with a silent auction featuring donated gifts. It’s been a winning combination for our family. 

For the second year, we’ve hosted a successful fundraiser in honor of our daughter, Ashley Middendorf of Smithton, Ill. This time, we raised $6,000 for the NBIA research fund and are planning to make the Scotch Doubles Crazy Bowl an annual event. 

We had 72 couples bowling on Nov. 13 and bidding on more than 120 items and gift baskets donated by businesses and individuals in our community. We also held three raffles. The grand prize for one of the raffles was a wheelbarrow filled with booze. 

Memory of little girl prompts fundraiser that nets $9,000 for NBIA research coffers
 
By Mark Michalisin
 

Inspiration comes to each one of us in different ways. My inspiration to help the NBIA Disorders Association came from two sweet little girls, Sabrina and Alyssa Barbiero.

Seven years ago, I met the Barbiero family of Niskayuna, New York, and became close with them. Sabrina and Alyssa, though dealing with NBIA, were always cheerful and smiling. Every time I jogged by their house, they would wave and smile from their front yard.

Tragically Sabrina lost her battle with NBIA earlier this year. The afternoon of her passing, my inspiration came as I jogged past her house. I decided I would honor her memory and do everything I could to help raise money to find a cure for her disease.

Plans for a triathlon were laid. I set out to raise not only funds, but also awareness of NBIA. With the help of the Barbiero family and my own family, we mailed out fliers to all of our friends, relatives and business associates hoping to raise $5,000 and awareness of this devastating illness.

Throughout the summer, as I trained, Sabrina's memory was always with me. When I was wrung out physically by the training, I remembered what Sabrina and all of the others who have this disease have suffered. Three hours of swimming, biking and running seemed inconsequential. Sabrina was with me on every lap I swam, every mile I biked, every step I ran.

The race was held in Vermont, Aug. 15, and again, I felt Sabrina's presence. She even sent me a signal, a rainbow, that appeared to be smiling down on me as if to say — I am here and everything will be all right.

My wife, Renee, our sons, Logan and Lucas, along with the Barbiero family and other very close friends were all there to cheer me on. My goal was to finish the half-mile swim, 28-mile bike ride and five-mile run in less than three hours. I completed in two hours and 29 minutes. I had help, I am sure, from Sabrina. As I pushed Alyssa across the finish line, I knew I had accomplished something that was indeed special.

We raised close to $9,000, far surpassing our $5,000 goal. If one individual can accomplish these results, imagine if we all put the same energy and determination into action.

I am blessed to have the Barbiero family as my friends, and I am committed to helping in any way possible to help find a cure for NBIA. The outpouring of support that I received throughout my training was truly humbling, and the donations are still coming in.

Sabrina was my inspiration for this race. I believe we all have something that inspires us to fight this disease. What is yours?

August, 2004

Fundraising has slowed dramatically; research grants for 2005 in doubt

By Kris McGourthy 

We had fun runs, bowling tournaments and raffles that raised more than $200,000 in three years, enough to finance six research grants and cover the cost of administering them. We deserve a collective pat on the back. But 2004 has been a much slower year for fundraising. And the prospects for research grants for next year look doubtful. 

We all live incredibly demanding, busy lives. Most of us care for at least one disabled child, and some of us have two or more children affected by NBIA. We are pulled in many different directions, and frustration with the disorder is high. Most of us would give anything for a cure, but we feel powerless. 

But there is one thing we all can do to fight back. We can raise money to help the doctors and scientists working on this disease get closer to finding a cure for NBIA. Many of us have already shown what a little creativity, hard work and a little help from our friends and family can do. We just need to get more of you to do your part. 

Even if you don’t have a family member affected by this disorder, you can help in some small way. Reach out to your church; ask if the youth group would be willing to sponsor a car wash or bake sale for NBIA. Tell them, for some of our children, it could make all the difference. 

You may even find someone wanting to help with a bigger fundraiser like a bowl-a-thon, 5k run or a family fun day, like my family did near our hometown in Middleboro, Mass. Contact the media about your event. Newspapers and TV stations are looking for feature events on the weekends when news is slow. 

Even if you can’t do a fundraiser, don’t be afraid to contact your local media to tell them about yourself and your child. Or, if you’re an adult with the disorder, you also have a story to tell and you can raise awareness about NBIA in the process.

When you tell your story to the media, explain how we are trying to raise money for new research and for our next family conference and scientific workshop in 2005 where researchers from around the world will be gathering to discuss future research on our disease. Let the media know how important it is to be with other families because of the support you gain. Don’t forget to mention the Web page, and our mailing address. And, remember to mention that donations are tax-deductible. 

Anyone who wants more ideas about doing a fundraiser or needs help in planning one or contacting the media, please e-mail me at Rural9@aol.com. Mention fundraising in the subject field so I’m sure to flag it. 

I am convinced that fundraising is something we can all do, and you will be amazed at the sense of empowerment you will feel by doing something to advance the fight against NBIA. It is vital that we keep the research going. Please help by doing your part.

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The seeds for our successful NBIA Fun Day were planted last December when my oldest daughter was going through a rough time. Everyone — our family, friends and neighbors — wanted to do something to help.  Cheryl Lamos, another NBIA parent, and I formed a committee and met once a month to plan a fundraiser in Niskayuna, New York. It was the first time we had ever tackled anything of this magnitude. 

We decided to hold a variety of activities that people of all ages could enjoy. To help us get started, classmates of my daughter, Sabrina, held a bake sale on their street for two Fridays to raise money for NBIA. Carly Kirchner, Kira Nathan, Carly Seminer and Taylor Tear, all third graders at Rosendale Elementary School, came up with the idea on their own, their parents said. They put up posters around the school and the neighborhood.  One little boy said, "Now finally I can do something to help my friend Sabrina." 

Others pitched in, too. Girl Scout Troop #38 members Kara Williams, Kerri Valero and Leah Lubert did hair wraps for $1, where you take a piece of hair and wrap it up with colored thread, and donated the proceeds to NBIA. 

On the day of the fundraiser, Oct. 4, cold, rainy weather threatened to dampen the event, but family and friends from other states and even from Montreal came to cheer us on. Everyone huddled under a pavilion and tents that we had set up, hoping for a break in the clouds. 

Meanwhile, Pur-Cee and Cupcake the clowns kept the kids entertained with balloons and face painting. Jacqui Lape kept everyone happy with a continuous supply of fried dough. There was a huge table of baked goods to enjoy. Adrienne Bowman, Sabrina's summer Instructional aide, sang for the crowd. John Tobin from local radio station WPYX 106.5 kept us going with his humor, trivia and games. 

A huge attraction was the raffle, which included two free roundtrip tickets anywhere Southwest Airlines flies. The tickets sold faster than we expected. 

We raised more than $23,000. In addition, the Wright Family Foundation, a philanthropic non-profit started by the family of the founder of Schenectady International, Inc., where my husband Gerry works, generously donated $50,000, which NBIA Disorders Association is authorized to spend on research equipment. 

We are extremely grateful to the foundation, Southwest Airlines and our other sponsors. 

There are so many others to also thank. This day would not have happened without the dedication and support of all the volunteers, especially Marisa Barnes, Linda Cross, Chris Feeney, Liz Kasper, Holly Lape, Jacquelyn Lape, Megan McKeighan, Patrice McMorrow, Renee Michalisin, Barbara Sauter and Carol Venezio who gave up a lot of their Saturday mornings to attend our monthly meetings. We are forever grateful. Thanks to Sandy Paniccia, Donna Flynn and Kathy Fitzgerald who stayed the whole day setting up and cleaning up. I cannot forget all the Key Clubs from Niskayuna High School who helped with the parking and race.

The 1st Annual Scotch Doubles Crazy Bowl turned out to be a perfect game for the NBIA Disorders Association. An evening of bowling and laughter drew wide community participation and ended with $10,000 in NBIA's research fund. 

The fundraiser in honor of Ashley Middendorf was organized by Ashley's mom, Donna Helton, and her family, and Ashley's dad, Steve Middendorf, and his family. The Panarama bowling alley in Belleville, Ill. was packed with 115 bowling couples, and many others who came to support Ashley and have a good time. 

But there was more to the evening than bowling. Local businesses and individuals donated more than 100 items for a silent auction, and a wheelbarrow of alcohol was also raffled off.A highlight of the evening was Ashley's chance to hurl a bowling ball while everyone watched. Then, she thanked the crowd, using her communication device, and told everyone that the money raised that night would be used to help find a cure for her disease. The previously boisterous bowling alley was silent as many listened with tears in their eyes. 

August, 2003

Magic benefit brings in $4,000 for research fund

An evening of magic in Claremore, Ok., had a magical ending for the NBIA Disorders Association in April. A fund-raiser sponsored by Scott and Rhonda Mayfield raised more than $4,000 for NBIA's research fund.

Magician Michael Platten entertained young and old with his tricks while many children eagerly took part in the magic show as they were called on stage. A silent auction also was held, featuring 18 baskets of donated items from businesses, individuals and others in the community. Competition was keen for baskets donated by football rivals Oklahoma State University and the University of Oklahoma. A University of Oklahoma fan ended up ensuring that his school won by making the highest bid for a basket.

Two newspapers did feature stories. The Mayfields' church youth group helped in setting up the hall for the benefit, and the Sunday school class helped with the clean up. Family and friends helped to decorate with balloons and pictures. The United Methodist Women's groups helped cook and serve the food. So many others helped and had fun that the Mayfields said one thing is certain: they'll do it again.

August, 2003

Family helps raise money for research by selling candy 

The Stromsta family of Shorewood, Ill., has raised $560 for the NBIA Research Fund by selling Fanny Mae candy bars. 

Pam Stromsta said the sales were quick and easy because the candy bars are popular. The big favorite? The chocolate bar with caramel. They sell for $1 each and half of the profits go toward the research fund. 

The Stromsta children took the bars to school where they sold well and they had them available at their home when friends came over. A family friend also sold them at her restaurant, with a flyer about NBIA placed next to them. 

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August, 2003

Upcoming Fundraisers

Kids' Day America Fundraiser in Tulsa to benefit NBIA research fund

Another fund-raiser for the NBIA Disorders Association Research Fund will be held in Tulsa with help from a local chiropractic business, Brooks Spinal Care. 

Kids' Day America will be held Sept. 13 at the Holiday Inn Select at I-44 and Yale Ave. and will feature health screenings, disease prevention, nutrition awareness, sports safety, fire prevention and environmental awareness. Health screenings will include examinations for such conditions as spinal misalignment, scoliosis and dental problems. 

It won't all be serious, however. The day will include clowns, face painting, balloons, cartoon characters, entertainment by local childrens' choirs, karate and dance groups. Door prizes also will be awarded. 

All proceeds will benefit the NBIA Disorders Association Research Fund. Brooks Spinal Care is the host and is asking local businesses to contribute so that the event is free to all comers. 

One of our NBIA families, the Mayfields, are clients of Dr. Robert Brooks, the host and a member of the National Upper Cervical Chiropractic Association. This is a little known chiropractic technique that relieves distress from the central nervous system by correcting the entire spine at the level of the first vertebra, the atlas. For more information about Dr. Brooks and the fundraiser, see the Web site at www.brooksspinalcare.com.

Family Fun Day to be held in New York

A Family Fun Day, modeled after the successful ones held the past two years by the McGourthy family in Massachusetts, will be held in upstate New York on Oct. 4 to raise money for the NBIA research fund.

The event is being organized by Anabela Ferreira-Barbiero, the mother of two daughters with NBIA, Sabrina, 8, and Alyssa, 7, and Cheryl Lamos, who has four adult children, three with NBIA. They are Rebekah, 26, Bruce, 24, and Barbara, 23. It will be held at River Road Park in Niskayuna, near Albany, and will feature a 5k trail run/walk along with a fun 1mile run/walk for children, parents with strollers and the physically challenged. Other activities include face painting, raffles, games, clowning, barbecue, cotton candy, popcorn and more.

An army of friends is helping Anabela and Cheryl with the fundraiser, including Marisa Barnes, Linda Cross, Chris Feeney, Liz Kasper, Holly Lape, Jacquelyn Lape, Megan McKeighan, Patrice Mcmorrow, Renee Michalisin, Colleen Rubeor, Barabara Sauter and Carol Venezio.

All are welcome to attend. For more information, contact Anabela at (518)
381-4774 or by e-mail at fbela65@hotmail.com.

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April, 2003

Fundraiser in Claremore, OK

The Mayfields of Claremore, Okla. — Scott, Rhonda and daughter, Kelsey, who has NBIA/PKAN — are doing their part to help the NBIA Disorders Association reach an important goal: raise money for the Research Fund.

The family plans to hold a dinner and magic show April 26 at the First United Methodist Church, the church they attend in Claremore. They will sell tickets for $10 each and take donations. They will also be selling Home & Garden Candles for $8 each, and they will make $4 on each one.

Kelsey will have her picture taken at a studio with the magician and his dove for the flyers and advertising. Also, an article is planned for the Claremore Progress & Oologah Leader papers. "We have had a tremendous amount of support from friends, family, neighbors and church members,” Rhonda said. “We are looking forward to raising money for research."

Please contact info@NBIAdisorders.org if you are interested in having a fundraiser. We have handouts and information on fundraising and will be happy to assist you with your planning.

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December, 2002

Second annual family fun day nets $60,000

by Kris McGourthy

HSSA’s research fund is $60,000 richer thanks to all those who made the second annual “Follow the Rainbow for a Cure” fundraiser such a huge success. At the top of the list of those to thank is the South Boston Council #78 Knights of Columbus which contributed $40,000.

Money from the fundraiser, plus any additional donations that might come to HSSA’s research fund before the end of this year, will make it possible for the organization to again sponsor research grants next year.

Although my family, friends and I organized the event, held August 17, at camp Yomechas in Middleboro, Mass., many people contributed, from the folks who came to have fun on a hot day, to the South Boston Council #78 Knights of Columbus Charity Fund. We are especially grateful to Brother Knight Kevin MacMurry, Brother Knight Mark S. Riley, Brother Knight Michael J. Riley and Brother Knight Joseph M. Sweeney. The latter three all made donations in memory of James Civilikas.

Like last year’s family fun day, we again sponsored a run, walk, food and activities throughout the day. Despite hotter than normal temperatures, the run/walk attracted 40 participants. Many of the 200 who came to the camp took advantage of the lake and pools for swimming. The dunking booth was a great hit with the kids. The children also enjoyed games, crafts, pony rides, a petting zoo, storytelling, music and raffles. The highlight of the day was the arrival of 30 motorcyclists who took part in a parade to draw attention to HSS.

We were thrilled to have people from out-of-state join us, including two families we met at the HSSA conference in Indianapolis. From New York, Cheryl Lamos and her children and the family of Anabela Ferreira-Barbiero and Gerry Barbiero took part in the festivities. More Barbiero relatives came from Canada. It was the first time our sons had a chance to meet other people with HSS. Our son, Michael, was happy to see that Bruce Belcher, who is the son of Cheryl Lamos, can drive a car. Michael dreams of the day he will get his driver’s license.

We have many people to thank for this successful event. In addition to the Knights of Columbus, others raised money from sponsors, including Thomas Burbridge, who raised $515 and won a membership to the Old Colony YMCA. In addition, Gerry Barbiero raised $1,327 from sponsors, and Michael McGourthy Jr. brought in $2002.

Thanks also to the runners and walkers who braved the heat; the families who came out to support us; the bikers; the donors; the employees of Gillette; the Old Colony YMCA of Middleboro; Angela Tsolakakis and her family; the May family; the Shockley family; the Pike family; the Bisdan family; the Wisdom family; the Loto family; Ruth Ann Sensabaugh; Ray Gettemy; and my mother, Sally Phillips.

We are grateful to the many businesses and individuals that supported us with donations of money, goods and services.
  

December - 2001

5K family day event nets $30,000 for research fund  

With help from businesses, a good friend and the local Harley association, our first try at a major fundraiser for HSSA has made the research fund $30,0000 richer.

My husband Mike and I decided last spring to try to do our part to raise money for research for HSS. We chose a 5K walk/run, followed by a family picnic and a huge raffle. I recruited my energetic friend, Angela Tsolakakis of Middleboro to help us and we managed to pull off the event in about six weeks.

First, we asked local businesses to help us with donations and raffle items. They came through for us. Then, we sold raffle tickets and were fortunate to get some well-placed publicity. The Sunday Brocton (Mass.) Enterprise carried a front page story about our family story and the fundraiser. A local television station featured an interview with us and our sons— two of our three children have HSS. Donations poured in.

The YMCA, where I work, let us use their campground. Poland Springs donated water for the runners. Pepsi and Frito Lay donated 500 sodas and 500 bags of chips. Other businesses donated all of the hamburgers, hot dogs, rolls, napkins, baked goods and other picnic food. In the end, more than 70 businesses and families contributed goods, in addition to all our other donors. Even the weather cooperated. It was a perfect day.

The 5K attracted about 60 runners and walkers. Many more families than that came out for the fun day, which featured swimming, boating, face painting, games, crafts, a moon jump and pony rides. The YMCA dance team provided additional entertainment. About 30 members of the Harley club rode in with donations from the association and individual members.

It was a lot of work but fun and rewarding. We’re already planning our Second Annual 5K Walk/Run and Family Fun Day for 2002.
 

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May, 2001

Fundraising Update by Chairperson, Debbie Forstall

Our first bowl-a-thon: A perfect game

By Debbie Forstall

HSSA’s First Annual Bowl-a-Thon March 11 was a striking success. The organization grossed nearly $58,000 and, after expenses, net revenues come to $55,000—all for HSSA’s research fund. Over 200 people showed up to participate in the event—144 who bowled and raised at least $100 to compete. There were banners, lane signs, and hundreds of balloons everywhere you looked. The bowling alley looked incredible! Amid the roar of the pins, HSSA also sponsored a silent auction and drawings that raised more than $4,300.

Christopher Nance, NBC “weather dude,” emceed along with his wife Nicholette. Christopher has been a supporter of HSSA and recently gave a very generous donation on behalf of “The Christopher Nance Children’s Foundation,” in addition to being a Bowl-a-Thon sponsor. David Cruz, NBC news anchor, and his family also came out to support HSSA. And a special guest signed autographs and greeted bowlers: Former pop singer and TV star Bobby Sherman. It was such an honor to have these special people take the time to be a part of our day.

Special thanks goes to our title sponsor Hamer Toyota, which gave HSSA its first large gift last year, and to other major sponsors: The L.A. Daily News, NBC4, and Magic Moments Carriage n’ Coach. There were many other sponsors who made the event a success, as well as countless volunteers. Thanks to all who helped put together the silent auction baskets and helped fill each of the 144 bowler bags, and to the donors who provided food, items for the silent auction and bowler bags. Valenicia Lanes donated trophies and were wonderful to work with. It was because of all this support that the event was so successful.

Working behind the scenes for this event was the HSSA Bowl-a-Thon committee of 50 people. We had our first meeting back in December and then one more each month until the event (two meetings in March). With everyone having such a busy schedule it was a big commitment and we couldn’t have done it without you. I want to recognize and pay special tribute to Bud Brown. Countless hours went into making this event so successful and Bud was there for each and every one of those hours. He gave so much of himself to this event and I appreciate it, and him, so much.

This was a wonderful “learning” experience for me and I am very proud of the end result. Even more than that, I am proud to be a part of a community where people are so willing to get involved and give back to organizations like HSSA. I have met so many wonderful people and have made a lot of special friends through these fundraising efforts. My life has been truly blessed because of all of you.

Also, if you are interested in holding a bowling tournament in your area to benefit HSSA, I’d be happy to provide information on how this event was organized.

Also on the fundraising front, I want to thank a very special man, Bud Brown, for his generous support of HSSA. Bud is a dear friend of our family as well as a community leader and a volunteer. He has been instrumental in the recent fundraising successes that we have had. Bud has become my mentor and I am learning a great deal about fundraising from him.

If you would like to help HSSA with fundraising, please contact Debbie Forstall, at theforstalls@prodigy.net.

Fundraising Chairperson Receives Awards

Thanks also to state Sen. Cathie Wright of Simi Valley, Calif. for surprising me with a Certificate of Recognition for my fundraising efforts on behalf of HSSA. 

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Debbie Forstall, secretary and fundraising chairperson of HSSA, was chosen as “Woman of the Year” by the 38th Assembly District of California for her work on behalf of HSSA, community service and other activities. She was nominated by a member of her local Kiwanis Club and selected by Dr. Keith S. Richman, district representative. Eighty women, one from each Assembly District, were so honored.

Debbie and her husband, Mark, were flown to Sacramento March 12 where they attended a Capital breakfast reception. Lt. Gov. Cruz M. Bustamente presented the award, and in the Assembly room later, Speaker Robert M. Hertzburg gave the women an award on behalf of the legislature.

Debbie and Mark lunched with Richman and got a VIP tour of the Capitol. “It was a huge honor,” Debbie said, “and a wonderfully exciting day.”