Forebatten Foundation

David and Karen Kahn started ForeBatten Foundation in early 2017 when they received the devastating news that their twin girls, Amelia and Makenzie, had been diagnosed with juvenile Batten disease (CLN3); a rare and fatal genetic disorder of the nervous system which leads to vision loss, seizures, and loss of speech and motor function. ForeBatten supports researchers as they develop multiple therapies to detect, treat and potentially cure Batten disease. Rare diseases like Batten do not receive the same government assistance as other, more prevalent diseases, so we must join together as parents and caring individuals who are not willing to accept the fate of a Batten diagnosis. We work tirelessly to give children with Batten disease the best possible life, to spread awareness of the urgency to fund new treatments, and to help all families affected by Batten disease.