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
      • 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
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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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    • Contact Us

      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
2 Mar 2018

Over $70,000 raised in February!

March 2, 2018
Brittany Thomas
News, BE Project
It is an exciting time for the Foundation and our affected families as we near the possibility of a clini...
Read More
27 Feb 2018

High Schoolers Taking a Swing at Batten!

February 27, 2018
Brittany Thomas
News
The Youth Leadership Committee hosted their first-ever fundraiser at TopGolf in Austin Texas on Sunday, F...
Read More
13 Feb 2018

BBDF Welcomes the Bind Up Batten Fund

February 13, 2018
Brittany Thomas
News
BBDF Welcomes the Bind Up Batten Fund to our family of donor advised funds. By pooling resources and conn...
Read More
7 Feb 2018

Faces of Hope: ABC13 Houston Features Will Herndon

February 7, 2018
Brittany Thomas
News
BBDF and the Will Herndon Research Fund would like to thank everyone who tuned into, watched, shared, and...
Read More
6 Feb 2018

2018 Run to the Sun Success!

February 6, 2018
Brittany Thomas
News
This past Sunday Austin Youth Fitness hosted the 3rd annual Run to the Sun Fun Run 5K and Kids' K benefit...
Read More
1 Feb 2018

Interview: Co-Founder, Charlotte Benson on coping with a child’s terminal illness

February 1, 2018
Brittany Thomas
News
Listen to BBDF co-founder, Charlotte Benson as she discusses coping with a child's terminal illness on Th...
Read More
31 Jan 2018

Thank you for supporting BBDF in 2017!

January 31, 2018
Brittany Thomas
News, BE Project
Our first newsletter of 2018 is here and we are thrilled to announce that we have raised over $3.5 millio...
Read More
29 Jan 2018

Austin Kids host Bake Sale for Batten!

January 29, 2018
Brittany Thomas
News, BE Project
We love our young philanthropists who branch out on their own to raise awareness and funds for BBDF! Oliv...
Read More
25 Jan 2018

BBDF Welcomes Tyler’s Mission

January 25, 2018
Brittany Thomas
News
BBDF Welcomes Tyler's Mission to our family of donor advised funds. By pooling resources and connecting c...
Read More
24 Jan 2018

In Memory of Tyler Allman

January 24, 2018
Brittany Thomas
News
Tyler Pershing Allman April 9, 2001 - January 21, 2018 Our community lost a super hero when Tyler Allma...
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

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  • 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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