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
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    • 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
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    • 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

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    • 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
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    • Foundation Driven

      • Our Strategy
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    • Contact Us

      Beyond Batten Disease Foundation
      Phone: 512.275.2600
      Email Us

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    • UPCOMING EVENTS

  • BBDF Blog

500K

Beyond Batten Disease Foundation  ⁄  Our Team  ⁄  500K

Team Group

  • Staff
  • Board of Directors
  • 500K

500K

Our Team

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

Kasandra Keyes

500K

Mary Carrigee

500K

Lisa Michaux

500K

Cari and Monte Ezell

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?

  • My son’s time is running out due to a rare disease. The FDA needs to add more clinical trial flexibility March 2, 2023
  • Rare Disease Day 2023 – A Discussion February 23, 2023
  •  THERANEXUS, BBDF AND CARDIFF UNIVERSITY PRESENT THEIR NOVEL RESEARCH ON BATTEN-1 AND BATTEN DISEASE AT WORLDSYMPOSIUM 2023  February 22, 2023

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