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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      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?
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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 »

  • Research
    • What We Know

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      • CLN3 Gene
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      Beyond Batten Disease Foundation
      Phone: 512.275.2600
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    • UPCOMING EVENTS

  • A Mother’s Story
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Newsroom

Beyond Batten Disease Foundation  ⁄  Newsroom
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...
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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...
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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
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
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Recent Posts

  • THX Pharma and the Beyond Batten Disease Foundation Announce the Grant of a European Patent Protecting the Use of Batten-1 in Juvenile Batten Disease (CLN3)
  • THX Pharma, BBDF and Biocodex Announce Regulatory Submissions for the Phase 3 Clinical Trial of Batten-1 in Juvenile Batten Disease (CLN3)
  • BBDF-Funded Clinical Recommendations Mark a Major Milestone for CLN3 Disease Care
  • THX Pharma, Biocodex and the Beyond Batten Disease Foundation Stand Together with the CLN3 Batten Community on International Batten Disease Awareness Day
  • THX Pharma and Biocodex announce a strategic licensing agreement covering three rare diseases.

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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?

  • THX Pharma and the Beyond Batten Disease Foundation Announce the Grant of a European Patent Protecting the Use of Batten-1 in Juvenile Batten Disease (CLN3) September 16, 2026
  • THX Pharma, BBDF and Biocodex Announce Regulatory Submissions for the Phase 3 Clinical Trial of Batten-1 in Juvenile Batten Disease (CLN3) September 4, 2026
  • BBDF-Funded Clinical Recommendations Mark a Major Milestone for CLN3 Disease Care July 16, 2026

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