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
      • Chase The Cure
      • Delaney’s Dream
      • Hugs for Hudson
      • Iron Will
      • The Isla Edwards Research Fund
      • Nathan’s Batten Battle
      • Rare Sisters
      • Sofia’s Dream
      • Tyler’s Mission
      • Wheelers Warriors Research Fund
      • Will Herndon Fund

    • BBDF’s Role and Impact

      • Latest Updates
      • Batten-1 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

    • OVERVIEW

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    • UPCOMING EVENTS

  • A Mother’s Story
  • 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

Emily Lancaster

Development Manager

Staff

Alejandra Tijerina

Communications Manager

Staff

Ineka Whiteman, 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?

  • THX Pharma, Biocodex and the Beyond Batten Disease Foundation Stand Together with the CLN3 Batten Community on International Batten Disease Awareness Day June 9, 2026
  • THX Pharma and Biocodex announce a strategic licensing agreement covering three rare diseases. February 25, 2026
  • Theranexus Becomes THX Pharma: A Strategic Evolution Toward the Commercialization of Its Medicines for Rare Diseases September 29, 2025

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