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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    • BBDF’s Role and Impact

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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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    • 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
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      Beyond Batten Disease Foundation
      Phone: 512.275.2600
      Email Us

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    • UPCOMING EVENTS

  • A Mother’s Story
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Newsroom

Beyond Batten Disease Foundation  ⁄  Newsroom
2 Nov 2017

A Brother, A Sister and the Search for a Deadly Disease’s Cure

November 2, 2017
Kasandra Keyes
News, Press Releases, BE Project
  Below is an article that was written at the beginning of October. It's a great summary of G...
Read More
31 Oct 2017

Texas First Lady Cecilia Abbott opens her home to BBDF

October 31, 2017
Kasandra Keyes
News
We would like to give our heartfelt gratitude to First Lady Cecilia Abbott for opening her home to allow...
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25 Oct 2017

Beyond Batten Disease Foundation Annual Report 2016/2017

October 25, 2017
Kasandra Keyes
News
BBDF's 2016/2017 Annual Report is filled with research updates, inspiration, donor recognition and highli...
Read More
24 Oct 2017

Christiane’s Story by Texas Children’s Hospital

October 24, 2017
Kasandra Keyes
News, Videos
See the video that Texas Children's Hospital put out about Christiane and Beyond Batten Disease Foundatio...
Read More
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...
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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...
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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
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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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