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
      • Staff
      • Youth Leadership Committee
      • Founders Circle
      • Internships and Service Hours
    • Funds

      • Bind Up Batten
      • Charles ‘Wheeler’ Stecker Research Fund
      • Chase The Cure
      • Delaney’s Dream
      • Hugs for Hudson
      • Rare Sisters
      • Sofia’s Dream
      • Tyler’s Mission
      • Will Herndon Fund
    • BBDF’s Role and Impact

      • Accomplishment Timeline
      • The Be Project
      • BE a Hero
      • BBDF 101 Treatment
    • 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
      • BBDF 101
    • For Researchers

      • About Funding
      • Forms and Instructions
      • Resources
    • Contact Dr. Danielle Kerkovich

      Danielle M. Kerkovich, Ph.D.
      Phone: 202-812-6462
      Email Danielle

  • Get Involved
    • OVERVIEW

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    • UPCOMING EVENTS

      • Wild For Hope
  • BBDF Blog

Board of Directors

Beyond Batten Disease Foundation  ⁄  Our Team  ⁄  Board of Directors

Team Group

  • 500K
  • Board of Directors
  • Staff

Board of Directors

Our Team

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

Board of Directors

Contact Us

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

What’s New?

  • BBDF Announces Agreement with Actelion Pharmaceuticals Ltd to Provide Drug Product for BBDF-101 March 2, 2021
  • BBDF and Theranexus collaborate to publish journal February 5, 2021
  • BBDF-101 Announcement August 28, 2020

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