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
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    • Funds

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

      • Latest Updates
      • BBDF 101 Treatment
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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 »

  • Understanding Batten

    • About Batten Disease

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

    • Family Stories

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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
      • CLN3 Gene
      • Screening

    • Foundation Driven

      • Our Strategy
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      • BBDF 101

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      Beyond Batten Disease Foundation
      Phone: 512.275.2600
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Staff

Beyond Batten Disease Foundation  ⁄  Our Team  ⁄  Staff

Team Group

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Staff

Our Team

Mary Beth Kiser, CAE

President and CEO

Staff

Emily Armstrong

Communications Manager

Staff

Danielle M. Kerkovich, PhD

Principal Scientist

Staff

Sarah Vlcek, CAE

Development Manager

Staff

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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