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.

DONATE

Toggle menu

Skip to content
  • About Us
    • About the Foundation

      • Mission and History
      • Board of Directors
      • Staff
      • Founders Circle
    • 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
      • Batten Map
    • 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
      • Research Activities
      • Batten-1
    • For Researchers

      • About Funding
      • Forms and Instructions
      • Resources
    • Contact Us

      Beyond Batten Disease Foundation
      Phone: 512.275.2600
      Email Us

  • Get Involved
    • OVERVIEW

      • Donate
      • Create a Fundraising Page
      • Create a Fund
      • Volunteer
    • UPCOMING EVENTS

  • A Mother’s Story
  • BBDF Blog

Newsroom

Beyond Batten Disease Foundation  ⁄  Newsroom
10 Jun 2023

Expert Insights on Gene Therapy for International Batten Awareness Day

June 10, 2023
BeyondBatten
Research, News
Neuronal ceroid lipofuscinosis (NCL) is a group of 13 rare inherited lysosomal disorders affecting the ne...
Read More
7 Jun 2023

Theranexus and BBDF granted positive opinion by EMA for the design of Phase III trial to evaluate Batten-1 in CLN3 Batten disease

June 7, 2023
BeyondBatten
Research, News, Press Releases
Lyon, France – Austin, Texas, United States – 7 June 2023 – 7.30 am CEST – Theranexus, a biopharmaceutica...
Read More
16 May 2023

Families raised millions and handed rare disease therapies off to biotechs. But companies have backed out

May 16, 2023
BeyondBatten
News
When Julia Taravella’s two sons were diagnosed with an ultra-rare disease, she did something extraordinar...
Read More
9 May 2023

Theranexus and BBDF win FDA approval on efficacy endpoints for the Phase III trial to evaluate Batten-1 in CLN3 Batten disease

May 9, 2023
BeyondBatten
Research, News, Press Releases
Theranexus and BBDF win FDA approval on efficacy endpoints for the Phase III trial to evaluate Batten-1 i...
Read More
2 Mar 2023

My son’s time is running out due to a rare disease. The FDA needs to add more clinical trial flexibility

March 2, 2023
BeyondBatten
Family Stories
By Judy Stecker Feb. 28, 2023 My toddler, Wheeler, will probably not live to adulthood. Juvenile Batten...
Read More
26 Feb 2023

BBDF Presents at World Symposia 19th Annual Scientify Meeting

February 26, 2023
BeyondBatten
Research, News
BBDF was proud to partner with Theranexus and Engaged Health to present Understanding the Functional Burd...
Read More
23 Feb 2023

Rare Disease Day 2023 – A Discussion

February 23, 2023
BeyondBatten
Research, News
...
Read More
22 Feb 2023

 THERANEXUS, BBDF AND CARDIFF UNIVERSITY PRESENT THEIR NOVEL RESEARCH ON BATTEN-1 AND BATTEN DISEASE AT WORLDSYMPOSIUM 2023 

February 22, 2023
BeyondBatten
Research, News, Press Releases
From 22 to 26 February 2023 in Orlando, Florida  ▪ Presentation of preclinical data demonstrating how Ba...
Read More
6 Feb 2023

NCL Congress Report

February 6, 2023
BeyondBatten
Research, News
BBDF sponsored Ineka Whiteman, PhD to attend the 7th Meeting Translational Research Conference for the Ma...
Read More
5 Jan 2023

New Advance to the Theranexus and BBDF Batten-1 Program for Juvenile Batten Disease (CLN3)

January 5, 2023
BeyondBatten
Research, News, Press Releases
Beyond Batten Disease Foundation is excited to share the latest accomplishment on our journey to find a t...
Read More
1 2 3 4 5 … 30

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

Flickr

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

Join Our Mailing List

Sign up to get interesting news and updates delivered to your inbox.


GO!
Copyright © 2025 Beyond Batten Disease Foundation. All rights reserved. EIN: 26-3223661