Karen Kahn received her Bachelor’s of Architecture from University of Virginia and worked as a designer for 10 years before welcoming twin daughters Amelia & Makenzie in 2010.  At the age of 7, they were diagnosed with Juvenile Batten Disease CLN3.

Her design background is not incredibly useful for her current career as Co-Founder of ForeBatten Foundation.  However, immersing herself in the research world brings clarity and acceptance to her twins’ diagnosis.  Her devotion to understanding treatment paths lead to creating the development team for Zebrokysen, an ASO treatment for a unique mutation of CNL3. She is thankful for every researcher and batten family that has paved the path for today. 

And while she still prefers conversations about Framing & Wallpaper over Drugs & Dementia, her time is spent being the primary caretaker for her girls.  She faces her fear of public speaking by thinking of the challenges Amelia & Makenzie face every day and therefore has absolutely NO reason to complain.  

Her publications typically are under the aliases of Santa and the Tooth Fairy.  

She leans into the Kahn Family Motto…. “If you are not laughing you are crying”