Our Promise to Nicholas (OPTN) Foundation was founded in 2009 after Nicholas, our son, was diagnosed with Batten Disease, a rare and fatal neurological disease of childhood. At that time, we made a promise to Nicholas that we would do everything in our power to find a cure for this brutal and debilitating disease that will rob him of his childhood and take his life. In searching for a cure, the Foundation’s primary focus has been to fund research for Batten Disease that may also shed light on cures for more common diseases such as Parkinson’s and Alzheimers.
Through tireless efforts of family, friends and supporters, OPTN has directly funded research initiatives and spearheaded an international scientific workshop on curing Batten disease (in partnership with the National Institutes of Health). Individual families have benefitted from OPTN support of their stays during a clinical trial for their affected children. And, as you may know, Nicholas became the first person in the world to undergo a specific type of gene therapy, which we hope prolongs his life.
These efforts are bringing new hope to those suffering from this terrible disease and we are committed to finding a cure. We need your help. Please join us in this fight so that we can continue to make a difference for families impacted by this disease!
Heather and Chris Dainiak