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
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      • Bind Up Batten
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      • Delaney’s Dream
      • Hugs for Hudson
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      • Nathan’s Batten Battle
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      • 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
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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
      Email Us

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    • UPCOMING EVENTS

  • A Mother’s Story
  • BBDF Blog

Newsroom

Beyond Batten Disease Foundation  ⁄  Newsroom
24 Jan 2018

Austin American Statesman – Austin boy trying to raise $1 million for Batten disease treatment for sister

January 24, 2018
Brittany Thomas
News, BE Project
When his parents set out to raise $6 million in two years to fund a Food and Drug Administration clinical...
Read More
18 Jan 2018

KXAN: Teen sets $1M goal to fight sister’s fatal disease

January 18, 2018
Brittany Thomas
News, BE Project, Videos
WATCH THE FULL STORY HERE...
Read More
8 Jan 2018

Garland Benson: KVUE Daybreak All Star!

January 8, 2018
Brittany Thomas
News, BE Project, Videos
Garland Benson was recognized by the ABC News affiliate, KVUE for his efforts to raise $1 million to fund...
Read More
20 Dec 2017

North Carolina Golf Tournament Raises Close to $10,000 for Batten Research

December 20, 2017
Kasandra Keyes
News
Robert Price hosted a golf tournament at Reedy Creek Golf Course in Four Oaks, NC that raised close to $1...
Read More
4 Dec 2017

Weston and John ask for BBDF donations in lieu of gifts for birthday

December 4, 2017
Kasandra Keyes
News
  We're so grateful to Weston Ezell and his friend, John, for asking for donations to BBDF in lie...
Read More
1 Dec 2017

We’ve Reached $3.3 million on the Be Project!

December 1, 2017
Kasandra Keyes
News
The Be Project is Beyond Batten Disease Foundation's 24-month campaign to raise $6 million to fund the tr...
Read More
15 Nov 2017

Hudson Phillips enjoyed a day watching the Columbus Blue Jackets

November 15, 2017
Kasandra Keyes
News, Videos
Hudson Phillips of our affiliate fund, Hugs for Hudson, got to enjoy a day watching the Columbus Blue Jac...
Read More
9 Nov 2017

A Mother’s Story: Beyond Fear and Doubt – by Charlotte Benson

November 9, 2017
Kasandra Keyes
A Mother's Story
Robert Schuller once said, “I’d rather attempt to do something great and fail, than attempt to do nothing...
Read More
7 Nov 2017

Youth Leadership Committee Buzz Campaign

November 7, 2017
Kasandra Keyes
News
The BBDF Youth Leadership Committee has been hard at work on their BUZZ campaign! The committee places sw...
Read More
6 Nov 2017

Admirals Club of Austin donates $10,000 to BBDF

November 6, 2017
Kasandra Keyes
News
We are so grateful for the incredibly generous donation made to Beyond Batten Disease Foundation by the A...
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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