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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      • 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

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      • A Mother’s Story
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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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      • Batten-1
    • For Researchers

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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

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Our Team

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

Jennifer and Tom Pickens

500K

Tiffany Francis

500K

Paige and Jamil Alam

500K

Ellen and Tommy Burt

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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