Beyond Batten Disease Foundation

Join us in our mission to find a cure for Batten disease and prevent hundreds of similar rare genetic diseases that claim the lives of thousands of children every year.

DONATE

Toggle menu

Skip to content
  • About Us

    • About the Foundation

      • Mission and History
      • Board of Directors
      • Staff
      • Founders Circle

    • Funds

      • Bind Up Batten
      • Chase The Cure
      • Delaney’s Dream
      • Hugs for Hudson
      • Iron Will
      • The Isla Edwards Research Fund
      • Nathan’s Batten Battle
      • Rare Sisters
      • Sofia’s Dream
      • Tyler’s Mission
      • Wheelers Warriors Research Fund
      • Will Herndon Fund

    • BBDF’s Role and Impact

      • Latest Updates
      • Batten-1 Treatment
      • The Be Project
      • BE a Hero

    • Contact Us

      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

  • Understanding Batten

    • About Batten Disease

      • What is Batten?
      • Diagnosis/Symptoms
      • Prognosis
      • Screening
      • Living with Batten

    • Family Stories

      • Family Videos
      • A Mother’s Story
      • Share your Story
      • Batten Map

    • Contact Us

      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

  • Research

    • What We Know

      • State of the Science
      • CLN3 Gene
      • Screening

    • Foundation Driven

      • Our Strategy
      • Research Activities
      • Batten-1

    • For Researchers

      • About Funding
      • Forms and Instructions
      • Resources

    • Contact Us

      Beyond Batten Disease Foundation
      Phone: 512.275.2600
      Email Us

  • Get Involved

    • OVERVIEW

      • Donate
      • Create a Fundraising Page
      • Create a Fund
      • Volunteer

    • UPCOMING EVENTS

  • A Mother’s Story
  • BBDF Blog

Our Team

Beyond Batten Disease Foundation  ⁄  Our Team

Kasandra Keyes

500K

Mary Carrigee

500K

Lisa Michaux

500K

Cari and Monte Ezell

500K

T. Craig Benson

Chair

Board of Directors

Jeff Hunt

Board of Directors

William Murphy, Jr.

Board of Directors

Caroline Goodner

Board of Directors

Sabrina Brown

Board of Directors

Wayne Herndon

Board of Directors

Steven Silber M.D.

Board of Directors

Danielle M. Kerkovich, PhD

Scientific Consultant

Staff

Jonathan Feifs

Board of Directors
1 2 3 4

Contact Us

  • 512.275.2600
  • info@beyondbatten.org
  • 3305 Steck Ave., Suite 200, Austin Texas, 78757

Connect With Us

What’s New?

  • Theranexus and Beyond Batten Disease Foundation Announce Strong Positive Real-World Data Supporting Batten-1 Efficacy for the Treatment of Batten Disease May 14, 2025
  • Family Research Calls – May 13 & 15 April 30, 2025
  • Batten Disease Global Research Initiative Announces Inaugural Grant Recipients April 10, 2025

Join Our Mailing List

Sign up to get interesting news and updates delivered to your inbox.

GO!
Copyright © 2025 Beyond Batten Disease Foundation. All rights reserved. EIN: 26-3223661