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March 30. 2014 6:42PM

Promise

Our Promise to Nicholas Foundation Easter egg hunt in Bedford will benefit research into rare Batten disease


Heather and Nicholas Dainiak are shown at a previous Our Promise To Nicholas Annual Easter Egg Hunt, sponsored by the MOMS Club of Bedford. (COURTESY)

BEDFORD — When Nicholas Dainiak was diagnosed with a rare genetic disorder, his parents promised him they would do everything in their power to help find a cure.

On April 12, the sixth annual Our Promise to Nicholas Foundation Easter Egg Hunt will help raise money to fund research for Batten disease, currently an incurable neuro-degenerative disorder that affects two to four out of every 100,000 children born in the United States. Batten disease robs Nicholas, 10, and other children of their childhood and ultimately their lives.

Since its inception in 2009 by Chris and Heather Dainiak, the foundation's primary focus has been to fund Batten disease research.This year's annual Our Promise to Nicholas Easter Egg Hunt is from 8:30 to 11 a.m. Saturday, April 12, at the NH Sportsplex, at 68 Technology Drive in Bedford. The Easter egg hunt includes entertainment and activities for the entire family.
"The NH Sportsplex will come alive as children scout the field and scramble for colorful candy and sticker filled eggs. This event is more than a celebration of Easter, it is a celebration of life and the spirit of community," said Lisa Kaveney, of the MOMS Club of Bedford. "The heart and soul of this event is highlighted by the spirit of the children's enjoyment and the knowledge that the OPTN Foundation's mission is being carried forward."

Last year, the event was attended by about 1,100 adults and children, and raised about $15,000. The goal this year is to raise $20,000.

The foundation has gained the support of businesses and volunteers who give their time, money and resources, said Kaveney. This year's corporate sponsors include The NH Sportsplex, the Executive Health & Sports Center, Ira Lexus of Manchester, and the Elliot Health System.

"As a company we are always looking for ways to help noteworthy charitable causes. As the host sponsor for our fourth consecutive year, we are excited that this unique event creates an opportunity to generate awareness of this disease as well as provide support to a family within our local community. We hope to see everyone down here for some egg hunt fun," said Justin Benton, general manager of NH Sportsplex.

The foundation, in collaboration with other Batten disease nonprofits, organized an international conference with medical leaders from around the world. The goals were to streamline communication among scientists, to review current findings and assess the best possibilities of future research.

Egg hunting will take place every 10 minutes, and live entertainment will be provided throughout the event, including music from Nina Cullen of Nini Bambini, a demonstration from the Bedford Martial Arts School, Magician BJ Hickman, a Bubble Dance Party by DJ Kelly Elliott, and appearances from Wally the Green Monster, Manchester Monarchs' Mascot Max, Wumples the Clown, and Party Palace's Ice Queen. And, the Easter Bunny will be on hand to meet and greet children and adults. In addition, there will be games, face painting, bounce houses, a silent auction, bake sale and several gift baskets for raffle.

"The MOMS Club of Bedford is delighted to organize this event that helps to usher in the warmth of spring while supporting such an important mission. Whether you are returning for your sixth year or attending for the first time, there is something for everyone," said Kaveney.Tickets are $5 per person or $20 per family. Cash or check will be accepted at the door. Doors open at 8:30 a.m. and free shuttle service is available at Segway parking lot at 14 Technology Drive.

For more information about the egg hunt, go to optnegghunt.com. For more information about Nicholas, Batten disease and research, goto ourpromisetonicholas.com.

sclark@newstote.com


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