The Beyond Batten Disease Foundation was created by Charlotte and Craig Benson of Austin, Texas, in 2008 after their then five-year-old daughter was diagnosed with the disease. The mission of the Foundation is to eradicate Batten Disease. It seeks to accomplish that in two ways:
Raise awareness and money to accelerate research to find a cure for Batten Disease.
Develop an easy and inexpensive blood test to detect the gene mutations for Batten Disease, and hundreds of other rare conditions like it, that claim the lives of thousands of children each year.
Batten Disease is the common name of a group of conditions known as neuronal ceroid lipofuscinoses (NCLs). It is an inherited, neurological degenerative disorder that primarily affects children. It strikes without warning, starts with vision loss and seizures, progressively impairs the child’s cognitive and motor capacities, and ultimately takes their lives. It is difficult to imagine a worse fate for a child, but with your leadership and support there is hope. Join us in our mission to find a cure. For many families, this is truly a race against time.
Meet the Benson Family
Beyond Batten Disease Foundation is uniquely positioned to accelerate the pace of progress towards developing treatments, and one day, a cure, for Batten Disease. Its founders and board members have extensive contacts and relationships in the scientific and medical research communities. As a result, the Foundation is working to build a broad collaborative network of researchers who will bring a fresh and innovative perspective to accelerate the development of successful treatments.