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

Lora Hollingsworth, Development Manager
Lora Hollingsworth has dedicated her professional career to non-profit fund development. Previously, she worked as a grant writer for the Monterey Musem of Art and as coordinator for a bowl-a-thon fundraiser for Big Brothers Big Sisters of Santa Cruz County. Before joining the Beyond Batten Disease Foundation, Lora returned to graduate school to complete her Master's in Latin American Studies at the University of Texas at Austin. She also has a Bachelor degree in Anthropology from the University of California at Santa Cruz.

 

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 then 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.

In 2009, Wayne and Missy Herndon of the Woodlands, Texas, created the Will Herndon Fund for Juvenile Batten Disease Research following their son’s diagnosis. Click here to watch the Herndon family’s story (add link to video). For more information about the Herndon Family, please visit www.willherndon.org

The Beyond Batten Disease Foundation is a registered 501(c)(3) nonprofit organization located in Austin, Texas. Our tax I.D. number is 26-3223661.