$41K raised for Batten Disease, researchers gather in Maryland

BEDFORD – Easter was in full swing as the Our Promise to Nicholas Foundation’s eighth annual Easter Egg Hunt drew more than 1,500 guests to the New Hampshire Sportsplex in Bedford. The dome was alive with smiling faces, eggs blanketing the fields and kids scurrying about for treats.

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 hundreds of children in the United States. Seven years ago, the Egg Hunt was developed to create joy and celebrate Nicholas Dainiak’s life providing hope to those that loved him. It has been close to two years since Nicholas passed away, but his spirit filled every corner of the room. This year OPTN raised $41,000; the most at an OPTN event to date.

OPTN hosted its third bi-annual scientific conference on March 29, in Bethesda, Md. More than 30 doctors, researchers and scientists came from all over the world to share and collaborate on their latest work in the fight to cure Batten Disease. Small diseases like Batten do not have the backing from larger organizations to fund research, let alone support a face to face collaborative session. OPTN champions such efforts. New proposals for research will be submitted to the Batten Research Alliance (OPTN’s sister organization) through fall 2016. This year, OPTN continues to support the research selected from 2014, including a biorepository and natural history database through the University of Rochester and Harvard University, advancing the heath community in finding a cure for this disease.

For more information visit www.ourpromisetonicholas.com.