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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      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
14 Jul 2018

Be a Hero on Fox 7 Austin

July 14, 2018
Brittany Thomas
News, BE Project
An Austin 13-year-old is determined to find a cure for a rare & fatal disease in order to save his si...
Read More
6 Jul 2018

FDA Meeting Update

July 6, 2018
Brittany Thomas
News, BE Project
In May BBDF had its first meeting with the FDA to get input and direction on our plan for clinical trials...
Read More
5 Jul 2018

June Update – Only 6 months to go!

July 5, 2018
Brittany Thomas
News, BE Project
Only 6 months until we wrap up our first ever capital campaign to fund the treatment for juvenile Batten...
Read More
12 Jun 2018

In the News!

June 12, 2018
Brittany Thomas
News
2018 has been filled with fundraising, partnership and advocacy here at BBDF. With that said we wanted to...
Read More
8 Jun 2018

BBDF and the Louise H. Batz Foundation bring you Family Night 2018!

June 8, 2018
Brittany Thomas
News
In it's 4th year, the annual fall fundraiser, Family Night, is set for Sunday, September 23, 2018 and BBD...
Read More
24 Apr 2018

Calling all Heroes!

April 24, 2018
Brittany Thomas
News, BE Project, Videos
It's true what they say, "What starts here changes the world." Garland has enlisted the help of homet...
Read More
13 Apr 2018

BBDF Welcomes Chase the Cure

April 13, 2018
Brittany Thomas
News
BBDF Welcomes Chase the Cure to our family of donor advised funds. By pooling resources and connecting co...
Read More
21 Mar 2018

Batten Families Gather at TCH for Research Update

March 21, 2018
Brittany Thomas
News
For the first time in foundation history, affected families from all over the world gathered at the Jan a...
Read More
21 Mar 2018

BBDF Partners with ThinkGenetic in Support of Mission

March 21, 2018
Brittany Thomas
News
Spearheading a unique, cohesive strategy, Beyond Batten Disease Foundation has added ThinkGenetic to its...
Read More
15 Mar 2018

Brineura Approval Invigorates Research, Awareness About Other Batten Treatments

March 15, 2018
Brittany Thomas
News
Soon after the first-ever therapy for Batten disease was approved by the U.S. Food and Drug Administratio...
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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