Fighting the Batten Monster (2018-2024) is an ongoing collaboration with the Kahn family. David and Karen have 14-year-old fraternal twins, Makenzie and Amelia. In 2017, they were diagnosed with Juvenile Batten disease (CLN3). As the rapidly degenerative neurological condition progresses at different paces in each girl, their family navigates their unique childhood, mitigating what the disease brings: loss of vision, developmental regression, behavioral changes, memory loss, seizures and mobility loss. The Kahns have started a family foundation, Forebatten, through which they grant other families who need adaptive technology and fund research. The aim of this collaboration is to create a record for the family that they can use in their work to advocate for more funding for Batten and inspire medical professionals and researchers to study and find cures for rare diseases.
