OPTN has hosted dozens of fundraisers and events to champion the mission to cure Batten Disease. An estimated two to four children out of 100,000 in the United States are affected with this debilitating disease. This disease triggers seizures, blindness and immobility causing children to die between the ages of eight and twelve.
Sadly, Nicholas lost his battle with Batten on May 9, 2014, on his 11th birthday. Parents Chris and Heather are keeping their promise to Nicholas, as OPTN continues to work toward a cure. As a leader within the Batten community, OPTN started a sister organization, the Batten Research Alliance (BRA) supporting an un-biased grant application process and bi-annual scientific conference, providing education to families and professionals fighting this disease. With the support of other Batten Disease Foundations, OPTN offers the opportunity for scientists to come together to create and fund innovative research proposals. These efforts are bringing new hope to those children and families suffering from this fatal neurodegenerative disease. With love and passion we are keeping our promise.