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

Austin, Texas – March 30, 2015 – 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

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

Posted in Press Releases

March 2015


Posted in Newsletter Archives

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

Beyond Batten Year in Review, by Christiane Benson

Posted in Latest Update

Beyond Batten Disease Foundation and the New York Stem Cell Foundation Chosen as a National Innovator by the Milken Institute as They Partner to Find a Cure for Juvenile Batten Disease

The Battle is Personal for a Texas Father Who is Trying to Save His Own Daughter’s Life

New York City, New York – November 17, 2014 – Beyond Batten Disease Foundation (BBDF) and the New York Stem Cell Foundation (NYSCF)

Posted in Press Releases

The Mission to Save Will Herndon

By Tish Williams in Houston Lifestyles & Homes

Published November 1, 2014

The Community Has Contributed $3 Million to Find a Cure for Juvenile Batten Disease

When Missy Herndon received the call with her son’s test results, the genetic counselor

Posted in Media Coverage

NYSCF Research Institute announces largest-ever stem cell repository


Published on October 22, 2014

The New York Stem Cell Foundation (NYSCF) Research Institute, through the launch of its repository in 2015, will provide for the first time the largest-ever number of stem cell lines available to the

Posted in Media Coverage

Hair Crafters holds 18th Annual ‘Cut for a Cause’ event


Published October 19, 2014

Blue extensions and $20 haircuts drew folks to Hair Crafters Sunday afternoon for the 18th Annual “Cut for a Cause.”

This year the money raised goes towards research for Batten disease, a rare

Posted in Media Coverage

Top Research Collaborations Explain How They Are Speeding the Path to Cures

By FasterCures

Published October 8, 2014

WASHINGTON, DC–(Marketwired – Oct 8, 2014) – Thirty of the most creative, cross-sector collaborations in medical research will present their models to potential partners and funders at FasterCures’ sixth annual Partnering for

Posted in Media Coverage
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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