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

Our Team

Beyond Batten Disease Foundation  ⁄  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

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

500K

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?

  • New Advance to the Theranexus and BBDF Batten-1 Program for Juvenile Batten Disease (CLN3) January 5, 2023
  • BBDF Sponsors BDSRA Australia’s 2022 Family Retreat December 6, 2022
  • BBDF Sponsors NCL Congress December 6, 2022

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