Sweet 16 Celebration Becomes Lifeline for Twins Battling Rare Disease

ForeBatten Foundation launches national campaign to fund Batten disease research

Published on Feb. 12, 2026

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For twin sisters Amelia and Makenzie Kahn, turning 16 marks another year fighting Batten disease, a rare and fatal childhood neurological disorder. In honor of their Sweet 16 birthday on March 16, the ForeBatten Foundation is launching a nationwide campaign culminating in a three-day online auction running March 15–18, 2026, to accelerate research and treatment development for children diagnosed with Batten disease.

Why it matters

Batten disease progressively robs children of vision, cognitive ability, and motor function, ultimately shortening their lives. There is currently no cure, but the ForeBatten Foundation has helped advance promising new approaches, including personalized genetic therapies now being studied for rare neurological diseases. Continued funding is critical to build on this momentum and move toward accessible therapies for more children.

The details

After years of donor-funded research supported by ForeBatten, Amelia and Makenzie began receiving an experimental, personalized genetic treatment in 2024; an early but groundbreaking step offering hope for families facing this devastating diagnosis. The ForeBatten Sweet 16 online auction will feature once-in-a-lifetime travel, golf, and luxury experiences, as well as multiple ways for supporters nationwide to participate, including bidding, direct giving, or purpose-driven shopping to advance Batten disease research.

  • The ForeBatten Sweet 16 online auction runs March 15–18, 2026.
  • Amelia and Makenzie Kahn's Sweet 16 birthday is on March 16.

The players

Amelia and Makenzie Kahn

Twin sisters who have been battling Batten disease, a rare and fatal childhood neurological disorder, since birth.

ForeBatten Foundation

A non-profit organization founded by the Kahn family that invests directly in targeted, science-driven Batten disease research and therapy development.

Karen Kahn

Co-founder of the ForeBatten Foundation and the twins' mother.

Michelle Hastings

Professor of Pharmacology at the University of Michigan Medical School, who has been involved in the progress of personalized genetic therapies for rare neurological diseases.

Carol Schwimmer

Foundation Director of the ForeBatten Foundation.

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What they’re saying

“For sixteen years, we have been incredibly grateful for every moment with our girls. Because of this community, Amelia and Makenzie have access to an experimental treatment that didn't exist just a few years ago. Their Sweet 16 is a celebration of hope — and a reminder that time matters. We are determined to keep pushing research forward so more families have this chance.”

— Karen Kahn, Co-founder of ForeBatten Foundation and the twins' mother (PRNewswire)

“This personalized genetic approach represents a new frontier in treating rare neurological diseases. The progress we are seeing today is the direct result of sustained philanthropic support. Continued funding gives us a real opportunity to expand these advances to help more children.”

— Michelle Hastings, Professor of Pharmacology, University of Michigan Medical School (PRNewswire)

What’s next

The ForeBatten Sweet 16 online auction runs March 15–18, 2026, providing multiple ways for supporters nationwide to participate, including bidding, direct giving, or purpose-driven shopping to advance Batten disease research.

The takeaway

This campaign turns a birthday celebration into a chance to help children around the world battling Batten disease, a rare and fatal neurological disorder. Every bid and every donation helps move research forward, offering hope for families facing this devastating diagnosis.