Sweet16

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About ForeBatten Foundation & Take a Swing Fore Batten - Sweet 16 edition

For most teens, turning 16 is a celebration of new freedom and possibility. For children with Batten disease, the future is far less certain. Batten disease (CLN3) gradually robs children of vision, cognitive ability, and motor skills, ultimately shortening their lives.

After years of donor-funded research supported by ForeBatten, the twins were able to begin receiving an experimental, personalized genetic treatment in 2024; an early, groundbreaking step offering new hope for families facing this devastating disease. Continued funding is critical to build on this momentum and move closer to broader, accessible therapies.

"For sixteen years, we have been incredibly grateful for every moment with our girls," said Karen Kahn, co-founder of ForeBatten Foundation and the twins' mother. "Because of the generosity of this community, Amelia and Makenzie have access to an experimental treatment that simply didn't exist a few years ago. Their Sweet 16 is a celebration of hope, but also a reminder that time matters. We feel a deep urgency and determination to keep pushing research forward so more families can have the same chance."

ForeBatten was founded by the Kahn family to change the trajectory of Batten disease through targeted, science-driven investment in research. That investment is now showing tangible progress.

"This personalized genetic approach represents a new frontier in treating rare neurological diseases," said Michelle Hastings, Professor of Pharmacology, University of Michigan Medical School. "The progress being made today is the direct result of sustained philanthropic support. Continued funding gives us a real opportunity to expand and refine these advances so that more children can benefit in the future."