Our Mission

Beyond Batten Disease Foundation was established to eradicate Batten disease.

We seek to accomplish our mission in two ways:

Treatment and Cure

And money to accelerate reasearch to find a cure for Batten disease

Prevention and Diagnosis

An easy and inexpensive 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.

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 juvenile 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 children with Batten disease.

In 2009, following their son’s diagnosis, Wayne and Missy Herndon of The Woodlands, Texas, joined Beyond Batten Disease Foundation to create the Will Herndon Fund for Juvenile Batten Disease Research.

Development Board

These active volunteers and community leaders serve as ambassadors to help us grow and accomplish our mission by extending the reach of our community and raising awareness and funds for research to find a cure for juvenile Batten disease.

In October 2013, charter members joined the Beyond Batten Disease Foundation Development Board for a two year term. These active volunteers and community leaders will serve as ambassadors to help us grow and accomplish our mission by extending the reach of our community, and raising awareness and funds for research to find a cure for juvenile Batten disease.

If you are interested in becoming a member of BBDF’s Development Board, please contact info@beyondbatten.org. Nominations will take place in the Spring.