Batten disease is a fatal neurodegenerative disorder that takes away childhood, and then takes away the child.

But there is hope.

BBDF's Strategy

Our Research Strategy

Beyond Batten Disease Foundation is spearheading a unique, cohesive strategy that incorporates independent scientific resources and collaborations with related funding organizations to drive research into Batten Disease.

See how Beyond Batten Disease Foundation is working with academia, the pharmaceutical industry, and government agencies to cross the “Valley of Death” between initial scientific discoveries and meaningful progress toward treatments and cures.


Million invested in research


Times BBDF funded research has been cited


Medical Breakthrough


FDA Approved Clinical Trial

Family Stories

Our Batten Families

Meet the Bensons

In 2008, Beyond Batten Disease Foundation was formed by Charlotte and Craig Benson in response to their daughter Christiane’s diagnosis of Batten disease and supported by a community who shared the belief that something had to be done. Christiane is now 13 years old and lives in Austin, TX with her parents and her little brother, Garland.

Meet the Herndons

In 2009, Missy and Wayne Herndon founded The Will Herndon Research Fund (HOPE) to raise awareness and support for research into finding a cure for juvenile Batten disease.  This effort began in honor of their son, Will, who was diagnosed at the age of 6. Will is now 13 years old and lives in the Woodlands, TX with his parents.

Meet the Watsons

The Luke and Rachel Batten Foundation was formed in 2001 to honor Luke and Rachel Watson. Luke was born September 17, 1992 a healthy happy baby. Sixteen months later on January 28, 1994 Rachel arrived. The Watson family was complete. Luke was diagnosed with juvenile Batten disease in February of 1999. In June of that same year Rachel was also diagnosed. Rachel passed away in August 2016.

Meet the Allmans

Tyler Allman was diagnosed with Batten disease in 2009. In 2014 his parents, Heather and Royer Allman started a go fund me page called “Team Tyler” to raise money in support of Batten disease research. Tyler is now 15 years old.

Meet the Sikorras

Lori and Joe Sikorra found out that both of their sons, John and Ben, had Batten disease. John sadly passed away in September of 2015. Ben recently fulfilled a dream of his to attend college enrolled as a freshman at California Lutheran University (CLU) this fall. The Sikorras live in Westlake Village, CA, near Los Angeles.

Meet the Mitzels

Sheri and Roger Mitzel’s youngest daughter Jamie was diagnosed with Batten disease at the age of 17.

Meet the Sillmans

Mike and Cara Sillman’s son, Drew, was diagnosed with juvenile Batten disease on May 3, 2017.

Meet the Fries

Parents Beth and Jon Fries established the Rare Sisters fund with BBDF in 2018 shortly after learning that two of their five daughters, Cecilia and Lilly, had juvenile Batten disease.

Meet the Kims

Tyler’s Mission and the Kim family joined BBDF in 2018. Together with their community in Virginia they are hard at work to make a difference for their youngest son Tyler and all of the children affected by Batten.

Meet the Kleins

Parents Jo and Mike Klein established Bind Up Batten Fund with BBDF in 2018. Their son Charles was diagnosed with juvenile Batten disease in April, 2017.

Meet the Petersons

The Peterson family established Chase the Cure in 2018 in response to their son, Jasper’s, diagnosis of juvenile Batten disease. Based out of Utah, the family and their community are hard at work raising awareness and funds to fight this disease.

Create Your Own Crowdfunding Page

Community fundraisers are a great way to give back and get involved with our foundation. From lemonade stands to fishing tournaments, our supporters are always finding creative ways to raise funds and awareness for juvenile Batten disease.