Keeping a promise: Easter event supports fight against Batten disease

Courtesy photo Children have fun at a previous Our Promise to Nicholas Easter Egg Hunt Festival. This year’s event, the 10th annual, is set for Saturday, March 31 at the NH Sportsplex in Bedford.

Our Promise to Nicholas Foundation (OPTN) announces the 10th annual Egg Hunt Festival in Bedford later this month.

More than 10,000 eggs will be ready for your little ones to gather up at the year’s festival, scheduled for 8:30 a.m.-noon Saturday March 31, at the NH Sportsplex in Bedford. This is a popular family fundraising event, now it its 10th year, has become a favorite of the Hillsborough County residents and their children.

The Easter Bunny is ready with candy and prize filled eggs. “Wally” from the Red Sox is coming to meet and great all those young (and not so young) Red Sox fans. For those not actively “hunting,” there will be live entertainment by Toe Jam Puppet Band and Jungle Jim Balloon Artist and Magician of Boston. The Disney princesses are back! Also, at the hunt will be Fisher Cat’s mascot, Fungo, lovable characters, bounce houses, games, face painting, Canvas Road Show, clowns, silent auction, a bake sale and huge raffle for amazing Easter baskets.

OPTN is seeking sponsors, at all levels for this event to join their contributing sponsors the NH Sportsplex, Executive Health and Sports Center, Alkemy Partners, Catholic Medical Center, Bedford Ambulatory Surgical Center, Derry Medical Center of Bedford, Derry Imaging, Eastern Bank, Rothwangl Dental Care, Granite State Gastrointestinal Consultants and Spectrum Marketing. Through the support of corporate sponsorships, local businesses and community volunteers, last year’s event was attended by 1,200 guests, who helped raise $25,000 for the foundation.

Courtesy photo Children play a game at a previous Our Promise to Nicholas Easter Egg Hunt Festival.

The goal for 2018 is to continue to raise funds to support expert nursing care for children suffering from Batten disease and fund essential research supporting a national data base and patent registry through the University of Rochester and Massachusetts General Hospital. OPTN plans to host a fifth scientific Batten Disease conference in Bethesda, Md., by bringing expert researchers together from all over the world to continue collaborative efforts to diagnose and cure Batten disease in children. OPTN will be also be supporting a Batten family emergency fund through the BDSRA (Batten Disease Support and Research Association) for families in financial need, to help with essential needs for their children.

Tickets are being sold online for $8 per person or $28 per family. By registering online at www.ourpromisetonicholas.com, you will be assured a speedy entry. Tickets will be sold at the door for $10 per person and $32 per family. Cash, check or charge will be accepted at the door. The NH Sportsplex is located at 68 Technology Drive in Bedford.

There are many ways to support this cause, such as: event exhibitors, advertisement opportunities, raffle basket or silent auction donations. Volunteer opportunities are open for sign up on the website. Contact Heather Dainiak, CEO and co-founder, at heatherdainiak@hotmail.com to support the OPTN Egg Hunt Festival.

Established in 2009, as a nonprofit charitable foundation, OPTN was founded by Chris and Heather Dainiak, of Bedford, after their son, Nicholas, was diagnosed with a rare, fatal neurological brain disease called Batten disease. Nicholas’ parents promised him that they would work tirelessly to find a cure for this little-known disease. An estimated two to four children out of 100,000 in the United States are affected with Batten. This disease triggers seizures, blindness and immobility causing children to die between the age of 8 and 12.

Sadly, Nicholas lost his battle to Batten disease on May 9, 2014 on his 11th birthday. In keeping our promise to Nicholas, OPTN continues to work toward a cure. We are a leader with in the Batten community supporting worthy medical grants with financial aid and providing education to families and professionals fighting this disease. With the support of other family foundations, we offer the opportunity for scientists to come together to create and fund innovative research proposals. These efforts are bringing new hope to those suffering from this fatal disease. Join us in our battle against Batten disease.

Children take a photo with Easter Bunny at a previous Our Promise to Nicholas Easter Egg Hunt Festival. This year’s event, the 10th annual, is set for Saturday, March 31 at the NH Sportsplex in Bedford.