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

Our Team

Beyond Batten Disease Foundation  ⁄  Our Team

Annie and Ward Downing

500K

Leah and Chris Petri

500K

Dana and Jeff Kocurek

500K

Sha and Mike Klatt

500K

Allison and Clint Small

500K

Clary and Mark Auler

500K

Courtney and Blake Houston

500K

Laura and Michael Townsend

500K

Shanel and Dean Vandergriff

500K

Patricia and Kit McConnico

500K

Susanne and Colby Denison

500K

Suzie and Eric Wright

500K

Niffer and Mark Greenberg

500K

Laura and Todd Wallace

500K

Brannon and Lathrop Smith

500K

Ellie and Bill Snell

500K

Melissa and Eric Levine

500K

Kris and Danny Krause

500K

Stacy and Mike Toomey

500K

Elaine and Britt Benton

500K

Shana and Brady Anderson

500K

Kimberly and Randall Schultz

500K

Laura and Tommy Craddick

500K

Anna and Reg Hargrove

500K

Lesley and Cullen Childress

500K

Diane Humphreys

500K

Tracy and Jarrett Anderson

500K

Kyle Janek

500K

Charlotte and Craig Benson

500K

Lisa and Ross Jessup

500K

Amanda and Randall Oudt

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 Beyond Batten Disease Foundation Announce Strong Positive Real-World Data Supporting Batten-1 Efficacy for the Treatment of Batten Disease May 14, 2025
  • Family Research Calls – May 13 & 15 April 30, 2025
  • Batten Disease Global Research Initiative Announces Inaugural Grant Recipients April 10, 2025

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