Our Mission

Beyond Batten Disease Foundation was established to eradicate Batten disease. We seek to accomplish our mission in two ways:

1. Raise awareness and money to accelerate research to find a cure for Batten disease. Learn more.
2. 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. Learn more.

Our Team

Staff:

Suzanne Kho, Executive Director
Cori Cuéllar, Administrative Assistant

We are taking time to thoughtfully and carefully assemble the brightest minds to serve on our Scientific Advisory Board and Advisory Council. We will announce those teams in the coming months.

Our History

Craig and Charlotte Benson established Beyond Batten Disease Foundation in August 2008 after their five-year-old daughter, Christiane, was diagnosed with Batten disease. Together with hundreds of families affected by Batten disease, and many more supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane, and all of the other children with Batten disease. Click here to watch the Benson family’s story.

The Beyond Batten Disease Foundation is a registered 501(c)(3) nonprofit organization located in Austin, Texas.