BwB’s Mission

Brothers With Batten’s was created from lived experience.

We grew up with Jordan and Zachary, and our lives were shaped by loving them, supporting them, and witnessing firsthand how Batten disease changes a family.

This mission is deeply personal to us because these boys were — and always will be — at the center of our hearts.

Our mission reflects what we’ve lived and what we believe families deserve:

1. Supporting New England Families

Families affected by Batten disease — both those still caring for their children and those who are grieving — deserve community, compassion, and practical help from people who truly understand.

2. Building a Center of Excellence

We are committed to contributing to the development of a Center of Excellence at Boston Children’s Hospital, ensuring families have access to specialized care, research, and resources close to home.

3. Supporting Batten Siblings

Siblings often carry their own quiet version of this journey. We help them attend the annual Batten Disease Family Conference so they can find connection, understanding, and a space where their experiences are recognized.