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
      [email protected]

      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
      [email protected]

      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

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

    • UPCOMING EVENTS

      • Rare Sisters Expect Miracles 5K
  • BBDF Blog

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

Emily Armstrong

Communications Manager

Staff

Danielle M. Kerkovich, PhD

Principal Scientist

Staff

Jessica Kemp-Park, D.C.

Director of the Will Herndon Research Fund

Staff
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Contact Us

  • 512.275.2600
  • [email protected]
  • 3305 Steck Ave., Suite 200, Austin Texas, 78757

What’s New?

  • BBDF-101 Announcement December 12, 2019
  • A Mother’s Story November 7, 2019
  • 2nd Annual Bind Up Batten Golf Charity August 14, 2019

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