Our Story

In July, 2010 the first fundraising group for RDH12 was established in the U.S. when four families met at a LCA conference in Philadelphia, PA. They immediately bonded over the one thing they all had in common—a young child with LCA caused by a mutation in the same gene, RDH12. The conference was both an exhilarating and frustrating experience for all of them. What had looked like an assured future of blindness for their children suddenly didn’t look so certain. They saw reports of new therapies being made available to some LCA patients that were changing their lives and giving them their vision back. Although this work showed what could be done for LCA, none of these treatments focused on the RDH12 gene which was so rare that no work was being done, nor was there any future plans to do so. It was at this time that they decided that they were not going to patiently wait in line for the research to turn it’s attention and funding to RDH12. They were going to try to make sure that a cure would come before their sight was gone. This is when the RDH12 Fund for Sight was born.