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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      • Bind Up Batten
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      • Delaney’s Dream
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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?
      • Diagnosis/Symptoms
      • Prognosis
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      • Living with Batten
    • Family Stories

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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
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    • Foundation Driven

      • Our Strategy
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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
30 Apr 2019

Rare Sisters Hosts First-Ever Expect Miracles 5K

April 30, 2019
BeyondBatten
News
Rare Sisters brought together a community of over 1,000 supporters on Sunday, April 28 for the fund's fir...
Read More
16 Apr 2019

Austin Takes a Swing at Batten

April 16, 2019
BeyondBatten
News
Blue skies, sunshine, and near-perfect temperatures provided the ideal setting for the BBDF Youth Leaders...
Read More
15 Apr 2019

Battlin’ Batten in Baffin Fishing Tournament Exceeds $400,000 in Total Donations!

April 15, 2019
BeyondBatten
News
Friends and supporters of Beyond Batten Disease Foundation gathered on Sunday, April 7 for the 11th annua...
Read More
9 Apr 2019

Jon and Beth Fries Share Their Family’s Story on CBS Denver

April 9, 2019
BeyondBatten
News
Parents and Rare Sisters founders Jon and Beth Fries appeared on CBS Denver on Monday, April 8, where the...
Read More
8 Apr 2019

BBDF Welcomes Delaney’s Dream

April 8, 2019
BeyondBatten
News, Family Stories
BBDF is proud to partner with Delaney’s Dream from West Virginia and welcomes them to our family of donor...
Read More
7 Apr 2019

Battlin’ Batten in Baffin Fishing Tournament Exceeds $400,000 in Total Donations!

April 7, 2019
BeyondBatten
News
Friends and supporters of Beyond Batten Disease Foundation gathered on Sunday, April 7 for the 10th annua...
Read More
26 Mar 2019

Inaugural Batten Bash is a Great Success!

March 26, 2019
BeyondBatten
News
The Jackson, MI community came out in strong support of Bind Up Batten’s inaugural Batten Bash fundraisin...
Read More
18 Mar 2019

Get Involved: April Fundraising Events

March 18, 2019
BeyondBatten
News
There are ample opportunities during the month of April to get involved and support BBDF. Make sure to vi...
Read More
8 Feb 2019

4th Annual Run to the Sun Fun Run Rescheduled for Friday, Feb. 22, 2019

February 8, 2019
BeyondBatten
News
Due to the weather conditions (being at or below freezing with wind chill and moisture), the Run to...
Read More
7 Feb 2019

BBDF Welcomes Sophia’s Dream

February 7, 2019
BeyondBatten
News, Family Stories
BBDF welcomes Sofia's Dream to our family of donor advised funds. By connecting affected families and com...
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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  • Press Releases
  • A Mother's Story
  • BE Project
  • Family Stories
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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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