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.

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  • About Us
    • About the Foundation

      • Mission and History
      • Board of Directors
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      • Bind Up Batten
      • Charles ‘Wheeler’ Stecker Research Fund
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    • BBDF’s Role and Impact

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      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?
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      • Prognosis
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    • 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
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      Beyond Batten Disease Foundation
      Phone: 512.275.2600
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Our Team

Beyond Batten Disease Foundation  ⁄  Our Team

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

Emily Armstrong

Communications Manager

Staff

Danielle M. Kerkovich, PhD

Principal Scientist

Staff

Sarah Vlcek, CAE

Development Manager

Staff
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Contact Us

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

Connect With Us

What’s New?

  • BBDF 101 Update April 28, 2022
  • BBDF-101 PHASE I/II TRIAL UNDERWAY February 3, 2022
  • Foundation Helps Sponsor Drafting of Guidelines for Juvenile Batten January 3, 2022

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