About the Foundation

Charlotte and Craig Benson established Beyond Batten Disease Foundation in August 2008 after their then five-year-old daughter, Christiane, was diagnosed with juvenile Batten disease. With other families affected by Batten disease and supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane and all children with Batten disease.

Following their son’s diagnosis in 2009, Missy and Wayne Herndon  joined Beyond Batten Disease Foundation to create the Will Herndon Fund for Research (HOPE). With the Woodlands community and Will’s Warriors, an army of HOPE volunteers, they have generated millions of dollars to support our research efforts. They are determined to find a treatment or a cure to save Will and other children. Find out more HERE.

The Hugs for Hudson Fund joined BBDF in 2016. Amy and Eddie Phillips, Hudson’s parents, say “partnering with BBDF has given us a chance to seek out the greatest opportunities available for helping Hudson and every other child that suffers from this devastating disease.” Find out more about Hugs for Hudson HERE.

The Bind Up Batten Fund joined BBDF in 2018. The Klein family led by Jo and Mike Klein are determined to make a difference for their son Charles and all of the children who suffer from juvenile Batten disease. Find out more about Bind Up Batten HERE.

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. Find out more HERE.

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.  Find out more HERE.

Beth and Jon Fries joined BBDF in 2018 in response to their two oldest daughters diagnosis of juvenile Batten disease. Based out of Colorado the Fries family and their community is fighting to make a difference for Cecilia and Lily as well as all of the children and families affected by this disease.  Find out more HERE.

The Urbina family joined BBDF in 2019 with the establishment of Sofia’s Dream. Sophia was diagnosed with juvenile Batten disease in 2015, and now her Mom, Marlo, twin brother, Max, and Team Sofia’s Dream based out of Portland, OR are dreaming up ways to fund a cure for Batten disease. Find out more HERE.

Janet and Dennis Mickey established Delaney’s Dream in memory of their daughter who lost her battle with juvenile Batten disease in January 2019.  The Mickey family wants to help other families and honor their daughter who reminds them every day to strengthen each other through trials and troubles by showing compassion to those around us. Find out more HERE.

Judy and Courtney Stecker establish the Charles “Wheeler” Stecker Research Fund to join forces in raising funds for a cure after their son Wheeler was diagnosed with Batten Disease. Find out more HERE.

The Isla Edwards Research Fund has teamed up with BBDF to join us raising funds to fight Batten disease. Find out more HERE.

BBDF is proud to partner with and welcome Nathan’s Batten Battle as one of our family funds who has committed to help raise awareness and funds to fight Batten disease. Find out more HERE.

Iron Will has partnered with BBDF to join us in raising awareness and funds to fight Batten disease. Find out more HERE.

BEYOND DIRECTED FUNDS

While some families affected by Batten disease choose to formalize their support by creating a directed fund, BBDF works with many others too. These families donate, advocate, and help us spread awareness by sharing information on social media. They also participate in our quarterly research conference calls. Batten families support each other and BBDF and we are honored to partner with them. Special thanks to the following families who are actively engaged in our mission and research projects:

The Watsons and the Luke and Rachel Batten Foundation in Texas, the Sikorras in California, the Currans in Massachusetts and the Allmans in Indiana.