Welcome

Thank you for visiting our site and your interest in Batten Disease.  Here you are going to learn about a extremely rare genetic disease that attacks children of all ages without warning and what families go through in facing this horrific disease.  Depending on age of the child at the onset of symptoms determines how long they may actually live. Some of these younger children have no chance at living any kind of quality of life once the symptoms begin. The younger they are the more rapid the disease progresses. Currently there is no cure, only medications to control seizures that someday become uncontrollable, and physical therapies to keep their mobility. We need to create awareness and funding for researchers trying to find our cure.

Golf Tournament Recap

Our Third Annual Batten Disease Research Golf Tournament was another huge success!  Thank you to our Sponsors, donators, golfers and volunteers for making it all possible and allowing us to donate $26,000 this year to our researchers trying to find our cure.