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
      • 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

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    • UPCOMING EVENTS

  • BBDF Blog

Our Team

Beyond Batten Disease Foundation  ⁄  Our Team

Mary Beth Kiser, CAE

President and CEO

Staff

Emily Lancaster

Development Manager

Staff

Emily Armstrong

Communications Manager

Staff

Ineka Whiteman, PhD

Scientific Consultant

Staff

Lauren and Regan Reaud

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Kelly and Dominc Longi

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Sydney and Scott Wallace

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Leigh and Chris Weyand

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Shannon and Jimmy Windham

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Jane and Ben Shepperd

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Tina and Brent McCutchin

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Melissa and Eric Levine

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Meredith and Alan Marks

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Leslie and Brandon Easterling

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Kelley and Tom Daniel

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Ann and Richard Hojel

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Shannon and Jimmy Windham

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Sydney and Scott Wallace

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Kelly and Dominic Longi

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Lauren and Reagan Reaud

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Kristen and Ben Hanson

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Anne and Richard Smalling

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Lisa and Wes Youngblood

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Katherine and Pat Jones

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Katie and Will Fowler

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Jane and Ben Shepperd

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Lawrence Temple

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Martha and Don DeGrasse

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Allison and Clint Small

500K

Joanne Grigsby

500K

Laura and Mark McKnight

500K
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Contact Us

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

Connect With Us

What’s New?

  • Theranexus and BBDF win FDA approval on efficacy endpoints for the Phase III trial to evaluate Batten-1 in CLN3 Batten disease May 9, 2023
  • My son’s time is running out due to a rare disease. The FDA needs to add more clinical trial flexibility March 2, 2023
  • BBDF Presents at World Symposia 19th Annual Scientify Meeting February 26, 2023

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