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

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      • Bind Up Batten
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      • Delaney’s Dream
      • Hugs for Hudson
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      • Wheelers Warriors Research Fund
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    • BBDF’s Role and Impact

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      • BE a Hero
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      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
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      • Living with Batten
    • Family Stories

      • Family Videos
      • 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
      • Screening
    • Foundation Driven

      • Our Strategy
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      • Batten-1
    • For Researchers

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      Beyond Batten Disease Foundation
      Phone: 512.275.2600
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    • UPCOMING EVENTS

  • A Mother’s Story
  • BBDF Blog

Newsroom

Beyond Batten Disease Foundation  ⁄  Newsroom
10 Feb 2017

BBDF Funded Research Featured in Nature Communications

February 10, 2017
Brittany Thomas
News, BE Project
BBDF is very proud of the research we have funded over the last 8 years.  We are especially honored to ha...
Read More
9 Feb 2017

YLC Hosts Family Movie Night!

February 9, 2017
Brittany Thomas
News
Join us for the Youth Leadership Committee’s movie night featuring Cheaper by the Dozen 2, benefiting...
Read More
25 Jan 2017

BBDF Welcomes Lauren Trice as Director of The Will Herndon Research Fund

January 25, 2017
Brittany Thomas
News, Press Releases
FOR IMMEDIATE RELEASE Contact: Missy Herndon Founder, The Will Herndon Research Fund hope@willhernd...
Read More
5 Jan 2017

Beyond Batten Disease Foundation Announces New Funding for Metabolomics to Drive Biomarker Discovery in juvenile Batten disease

January 5, 2017
Brittany Thomas
News, Press Releases
Beyond Batten Disease Foundation Announces New Funding for Metabolomics to Drive Biomarker Discovery in j...
Read More
4 Jan 2017

Battling Batten Disease: Baton Rouge Parent’s Magazine

January 4, 2017
Brittany Thomas
News
Published November 30, 2016 By Madeline Rathle Christiane Benson, 14, loves snow skiing, walking her do...
Read More
15 Dec 2016

2015/2016 Annual Report

December 15, 2016
Brittany Thomas
News, BE Project
It's HERE! Click to see the 2015/2016 Annual Report....
Read More
21 Nov 2016

Introducing the BE Project

November 21, 2016
Brittany Thomas
News, BE Project
Beyond Batten Disease Foundation is proud to introduce the BE Project! The BE Project is a 24 month, $6 m...
Read More
16 Nov 2016

Beyond Batten Disease Foundation, Noah’s Hope, Hope 4 Bridget and Batten Disease Research and Support Association Partner to Support the World’s Largest and most Comprehensive Batten Patient Registry

November 16, 2016
Brittany Thomas
News, Press Releases, BE Project
For Immediate Release Contact: Angela Hale Red Media Group Beyond Batten Disease Foundation, Noah’...
Read More
16 Nov 2016

BBDF Research Featured in Houston Chronicle

November 16, 2016
Brittany Thomas
News, BE Project
Six years ago, doctors told Missy and Wayne Herndon their 6-year-old son had a rare genetic disorder. The...
Read More
16 Nov 2016

Austin BE First Party featured in Austin 360!

November 16, 2016
Brittany Thomas
News, BE Project
Beyond Batten. First, there’s the house. None other like it in Austin. Dimensional Fund head David Booth ...
Read More
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Recent Posts

  • Theranexus and Beyond Batten Disease Foundation Announce Strong Positive Real-World Data Supporting Batten-1 Efficacy for the Treatment of Batten Disease
  • Family Research Calls – May 13 & 15
  • Batten Disease Global Research Initiative Announces Inaugural Grant Recipients
  • Batten-1 May Preserve Vision with Juvenile Batten Disease
  • Update on the Theranexus’ Batten-1 project in CLN3 Batten’s disease

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Categories

  • Research
  • News
  • Press Releases
  • A Mother's Story
  • BE Project
  • Family Stories
  • Videos

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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