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
      • Founders Circle

    • Funds

      • Bind Up Batten
      • Charles ‘Wheeler’ Stecker Research Fund
      • Chase The Cure
      • Delaney’s Dream
      • Hugs for Hudson
      • The Isla Edwards Research Fund
      • Nathan’s Batten Battle
      • Rare Sisters
      • Sofia’s Dream
      • Tyler’s Mission
      • Will Herndon Fund

    • BBDF’s Role and Impact

      • Latest Updates
      • BBDF 101 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

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    • UPCOMING EVENTS

  • BBDF Blog

Staff

Beyond Batten Disease Foundation  ⁄  Our Team  ⁄  Staff

Team Group

  • Staff
  • Board of Directors
  • 500K

Staff

Our Team

Mary Beth Kiser, CAE

President and CEO

Staff

Sarah Vlcek, CAE

Development Manager

Staff

Emily Armstrong

Communications Manager

Staff

Ineka Whiteman, PhD

Scientific Consultant

Staff

Danielle M. Kerkovich, PhD

Scientific Consultant

Staff

Contact Us

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

Connect With Us

What’s New?

  • My son’s time is running out due to a rare disease. The FDA needs to add more clinical trial flexibility March 2, 2023
  • Rare Disease Day 2023 – A Discussion February 23, 2023
  •  THERANEXUS, BBDF AND CARDIFF UNIVERSITY PRESENT THEIR NOVEL RESEARCH ON BATTEN-1 AND BATTEN DISEASE AT WORLDSYMPOSIUM 2023  February 22, 2023

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