A Mother’s Story


Photo by Catherine Sanderson |

On March 28, 2008, my husband Craig and I received the devastating news that our daughter, Christiane had been diagnosed with a very rare neurodegenerative disease called Batten Disease. Batten Disease

Posted in A Mother's Story by Charlotte Benson

Beyond Batten Disease Foundation Renowned Italian Researcher Publishes Groundbreaking Research in Top International Scientific Publication

Austin, Texas – June 9, 2015 – Beyond Batten Disease Foundation (BBDF) announces groundbreaking research published in Nature, a leading weekly international scientific journal. The lysosome biology research is leading the way to a cure for juvenile Batten Disease.


Posted in Press Releases

May Newsletter


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Christiane Christmas 2014

Have you ever wondered if you are relevant, significant, or if anything you do really matters? Sometimes I get moving so fast, occupied with my daily activities, and whirling in a million directions, that I wonder at the end

Posted in A Mother's Story by Charlotte Benson

Beyond Batten Disease Foundation Joins Innovative Network of Venture Philanthropies

Austin, Texas – May 12, 2015 – Beyond Batten Disease Foundation has become a participating organization of The Research Acceleration and Innovation Network (TRAIN), a program of FasterCures, bringing the total number of venture philanthropies in TRAIN to 80.

Posted in Press Releases

5th annual ‘Run to the Sun’ helps girl with rare disease

By Quita Culpepper on KVUE

Published on April 10, 2015

AUSTIN – A run will be held this weekend to help benefit a girl with a rare disease.

The Beyond Batten Disease Foundation was founded by Craig and Charlotte Benson

Posted in Media Coverage

Event to raise awareness about Batten disease

On Fox 7 News

Aired April 9, 2015

Watch Video HERE.

Posted in Media Coverage

Beyond Batten Disease Foundation and the New York Academy of Sciences Release a New Podcast Revealing Innovative Ways to Cure Rare Disease

Austin, Texas – Beyond Batten Disease Foundation (BBDF) and the New York Academy of Sciences (NYAS) are working together in a new and innovative way to find a cure for a rare disease. While diseases like cancer and Alzheimer’s are

Posted in Press Releases

Platform for Engaging Everyone Responsibly Awardees Announced

WASHINGTON, DC – March 24, 2015 – Today Genetic Alliance announced the fifteen awardees for Phase I of its initiative to create a ‘white label’ of the Platform for Engaging Everyone Responsibly (PEER). PEER enables individuals to share health information

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March 2015


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Taking Taylor’s story to Texas

By Josh Whitener in The South Charlotte Weekly

Published on March 9, 2015

Laura King Edwards can now add the Lone Star State to the growing list of locations where she’s run to raise awareness of rare diseases

Posted in Media Coverage

Woodlands family builds support to battle genetic disease

By Lindsay Peyton in The Woodlands Community Extra of The Houston Chronicle

Published on February 25, 2015

Will Herndon celebrated his birthday this month. For most families, this would be a joyous occasion, but the Herndons are

Posted in Media Coverage

Where There is a Will, There is a Way! Charities Partner at The Woodlands Marathon to Bring Hope to Children on World Rare Disease Day

THE WOODLANDS, TEXAS – Feb. 28. – Where there is a Will, there is a way! Meet the inspirational Will Herndon and his mother Missy at the Woodlands Marathon Saturday, February 28, 2015. Will’s Warriors will run on World Rare

Posted in Press Releases

Beyond Batten Disease Foundation of Texas and Brain Canada Launch New Partnership to Expand Network of Researchers Internationally

Austin, Texas– February 4, 2015 – Beyond Batten Disease Foundation (BBDF) and Brain Canada are pleased to announce a new partnership that will hire researchers in Canada to investigate, explore and find a cure

Posted in Press Releases

November 2014


Posted in Newsletter Archives
The Batten Blog

A place for those touched by Batten disease to to share information, ideas and inspiration. The goal of this blog is to connect families, communities, researchers and supporters that are spread out across the globe.

The Batten Blog ►

Keynote Speaker

As a mother of a child with a rare disease, Charlotte Benson has a unique perspective and message. Her inspiring story combined with her talent for connecting to the hopes, fears, triumphs and struggles we all face in our lives, makes her appealing to all audiences.

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