Karen Kahn | Co Founder
ForeBatten Foundation

Karen Kahn is the Co-Founder of the ForeBatten Foundation and the mother of twin daughters, Amelia and Makenzie, who were diagnosed with juvenile Batten disease (CLN3) in 2017, just shy of their seventh birthday. Karen earned her Bachelor of Architecture degree from the University of Virginia and spent ten years working as a designer before her family’s journey with Batten disease began. While her design background may not directly translate to her current work, Karen has immersed herself in the research community, finding clarity and purpose in understanding her daughters’ diagnosis and potential treatment avenues. Her dedication to advancing therapies for CLN3 led to the formation of the development team behind Zebronkysen, a personalized antisense oligonucleotide (ASO) treatment targeting a rare CLN3 mutation. Amelia and Makenzie received their first dose in June 2024 — a milestone that reflects years of collaboration and perseverance. Karen is deeply grateful to the researchers, clinicians, and Batten families who have paved the way for progress. Though she still prefers conversations about architecture, framing, and wallpaper over drugs and dementia, her focus today is on caring for her daughters, sharing their story, and driving forward treatments for other children affected by juvenile Batten disease.