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

Our Team

Beyond Batten Disease Foundation  ⁄  Our Team

Mary Beth Kiser, CAE

President and CEO

Staff

Emily Lancaster

Development Manager

Staff

Alejandra Tijerina

Communications Manager

Staff

Ineka Whiteman, PhD

Scientific Consultant

Staff

Lauren and Regan Reaud

500K

Kelly and Dominc Longi

500K

Sydney and Scott Wallace

500K

Leigh and Chris Weyand

500K

Shannon and Jimmy Windham

500K

Jane and Ben Shepperd

500K

Tina and Brent McCutchin

500K

Melissa and Eric Levine

500K

Meredith and Alan Marks

500K

Leslie and Brandon Easterling

500K

Kelley and Tom Daniel

500K

Ann and Richard Hojel

500K

Shannon and Jimmy Windham

500K

Sydney and Scott Wallace

500K

Kelly and Dominic Longi

500K

Lauren and Reagan Reaud

500K

Kristen and Ben Hanson

500K

Anne and Richard Smalling

500K

Lisa and Wes Youngblood

500K

Katherine and Pat Jones

500K

Katie and Will Fowler

500K

Jane and Ben Shepperd

500K

Lawrence Temple

500K

Martha and Don DeGrasse

500K

Allison and Clint Small

500K

Joanne Grigsby

500K

Laura and Mark McKnight

500K
1 2 3 4

Contact Us

  • 512.275.2600
  • info@beyondbatten.org
  • 3305 Steck Ave., Suite 200, Austin Texas, 78757

Connect With Us

What’s New?

  • Family Research Calls – May 13 & 15 April 30, 2025
  • Batten Disease Global Research Initiative Announces Inaugural Grant Recipients April 10, 2025
  • Batten-1 May Preserve Vision with Juvenile Batten Disease December 3, 2024

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