Our Mission

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

  1. Prevention and Diagnosis: Develop and commercialize 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 »
  2. Treatment and Cure: Raise awareness and money to accelerate research to find a cure for Batten disease. Learn more »

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. Watch the Benson family’s story »

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. Watch the Herndon family’s story »

HerndonFamilyPic-cropped for website

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.

2014 IRS Form 990 (pdf) »

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