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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    • Funds

      • Alexander’s Fund
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      • Chase The Cure
      • Delaney’s Dream
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      • Nathan’s Batten Battle
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      • Sofia’s Dream
      • Tyler’s Mission
      • Wheelers Warriors Research Fund
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    • BBDF’s Role and Impact

      • Latest Updates
      • Batten-1 Treatment
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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 »

  • Understanding Batten
    • About Batten Disease

      • What is Batten?
      • Diagnosis/Symptoms
      • Prognosis
      • Screening
      • 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 Oct 2017

New York Stem Cell Foundation and Beyond Batten Disease Foundation Announce the Availability of Stem Cell Lines for Research

October 10, 2017
Kasandra Keyes
News, Press Releases
The New York Stem Cell Foundation (NYSCF) and Beyond Batten Disease Foundation (BBDF) today announce the...
Read More
1 Jun 2017

Research Update from Dr. Marco Sardiello

June 1, 2017
Brittany Thomas
News, BE Project, Videos
BBDF has partnered with Texas Children's Hospital (TCH) to provide informational videos on the...
Read More
30 May 2017

May Newsletter

May 30, 2017
Brittany Thomas
News, BE Project
Take a look at our May Newsletter filled with event recaps, upcoming events in June and where we are toda...
Read More
1 Mar 2017

February Newsletter 2017

March 1, 2017
Brittany Thomas
News
Our supporters shared the love this February! Be sure and keep up with the Be Project by subscribing to o...
Read More
1 Mar 2017

January Newsletter 2017

March 1, 2017
Brittany Thomas
News
Keep up with the Be Project every month by subscribing to our monthly newsletter! JANUARY NEWSLETTER...
Read More
13 Feb 2017

BBDF Recognized in O’Dwyers: The Power of Patient Voices

February 13, 2017
Brittany Thomas
News, BE Project
The Power of Patient Voices...
Read More
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
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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

  • 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?

  • 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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