Easter Egg Hunt raises $25,000 for Batten Disease

Photo by Peter and Jo Smith from Headshots Photoraphy Children get ready to gather eggs at the recent OPTN Egg Hunt.

Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 9th Annual Easter Egg Hunt drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford. The dome was alive with smiling faces, with colorful eggs blanketing the fields and kids scurrying about for those coveted treats. There was music DJ’d by DJ McHoopsta (Heath Hooper), there were performers, including magician Jungle Jim of Boston, and kids band, Toe Jam Puppet Band, as well as a special performance by the Bedford Martial Arts Demonstration team. Children were so excited to win one of the over 40 special Easter baskets as well as over 30 silent auction items.

Sponsors tables have become a huge draw at the event as well, as vendors have continued to offer more free items and treats every year. It was a wonderful opportunity for local businesses and services to interact with over 1100 parents and children at a fun and worthwhile event. More than 30 sponsors attended this year, including Executive Health and Sports Center, NH Sportsplex, Catholic Medical Center, Bedford Ambulatory Surgical Center, Elliot Hospital, Alkemy Partners, Eastern Bank, Rothwangl Dental Care, Spectrum Marketing Company, SNHU Arena, and Granite State Gastrointestinal Consultants.

The OPTN Foundation is proud to have the dedication of the community in support of finding a cure for Batten Disease. A rare and currently fatal neurodegenerative disease, Batten afflicts two to four in 100,000 children born in the world. Nine years ago, the Egg Hunt was developed to create joy and celebrate Nicholas’s life, providing hope to those families stricken with this disease. It has been three years since Nicholas passed away, but his spirit filled every corner of the room. Proudly, OPTN raised $25,000 at the Egg Hunt Festival this year.

Excitement has brewed among the families with Batten disease over the past few weeks, as the FDA has recently approved a new treatment for one type of the disease, CLN2. This new drug Brineura, created by BioMarin, is now the first and only treatment for some children with this disease. It has so far been shown to stabilize the disease in treated patients and the hopes are high that these children will be able to run and play like any of their friends.

It is a huge accomplishment, and OPTN has helped play a role, with numerous scientific workshops and support for research on natural history of the disease. Money will continue to be used by OPTN to coordinate scientific collaboration and to help those children and families with this disease.

The next conference is planned for November 2017, which would be the 4th scientific conference in which researchers from all over the world collaborate on their latest work in the fight to cure Batten Disease and, for the first time, they will be able to discuss universal newborn screening for this genetic disease. OPTN is proud to champion such efforts and continues to support the biorepository and natural history database through the University of Rochester and Harvard University, crucial in the development of any new medications that are being contemplated.

Stuffing 10,000 eggs brings people together. The gift of this event is about showing our children and others how we can all make a meaningful difference. Knowing that Nicholas, in his own way, brought so many families, volunteers and community members together embodies the spirit of Easter, and the love of a family working for the hope of a lasting cure for all children with this debilitating disease. For more information visit: www.ourpromisetonicholas.com.

– Submitted by Heather N. Dainiak

CEO, Co-Founder & Nicholas’s Mom

Our Promise to Nicholas Foundation

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