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.
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.”
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.
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 email@example.com. Nominations will take place in the Spring.