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

Jennifer and Tom Pickens

500K

Tiffany Francis

500K

Paige and Jamil Alam

500K

Darby Denison

Ellen and Tommy Burt

500K

Jackee and Tony Kayser

500K

Heather and Jack Nelson

500K

Mary Korth

500K

Lisle and Scott Whitworth

500K

Lynn and Bill Fowler

500K

Sabrina and Jay Brown

500K

Becky and Bruce Butler

500K

Julie and Derek Lewis

500K

Gayden and Chris Breckwoldt

500K

Lori and John Daves

500K

Robin and Gene Shepherd

500K

Sylvia and Dan Sharplin

500K

Tricia and Sterling Roberts

500K

Lynne and Scott Daves

500K

Kristen and John Nelson

500K

Thresa and Mike Nasi

500K

Kristin and Alan Cowden

500K

Emily and Larry Chauvin

500K

Julie and Buddie Ballard

500K

Laurel and Andy Hooper

500K

Jill and Carlton Wade

500K

Amber and Neal Meinzer

500K

Ali and Trey Watson

500K

Carolyn and Scott Bryant

500K

Courtney and Charlie Hill

500K

Lucy and Steve Butter

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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