Hand-drawn illustration of a stuffed teddy bear with purple wings and a black bow tie, standing against a dark background.

Honoring the Brothers Who Inspired Us.

Supporting Every Family Facing Batten Disease.

Our family learned that Batten Disease changes everything — but it doesn’t erase love, joy, or the moments that make a family.


We created Brothers With Batten’s to help other families find strength, connection, and community on their own Batten journey.

Join us for our Clam Boil & Family Fun Day

Held in honor of Jordan
And in memory of Zachary

A purple logo featuring a globe made of interconnected lines and circles, with bold purple text to the right that reads "No One Battles Baten Alone."

Why We Do What We Do

Batten disease changed our family forever, and it taught us what families truly need — understanding, connection, and support from people who have lived this journey. Brothers With Batten’s exists to stand with families in New England and make sure no one faces this disease alone.

What is Batten Disease?

A clear, family‑friendly explanation of Batten Disease and, specifically, CLN7.