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

September 2014


Posted in Newsletter Archives

5th Grade Hope


Back to school always marks the end of summer with anticipation and excitement for a new season for children.  Even parents welcome the new routine. New beginnings abound for children of all ages and suddenly we find ourselves in a

Posted in A Mother's Story by Charlotte Benson

Beyond Batten Disease Foundation partners with NCL Foundation to award $344,742 to research team of Dr. Marco Sardiello, Baylor College of Medicine, Houston

As part of a larger $1.75M grant, BBDF continues to support Dr. Marco Sardiello’s research, investigating the role of CLN3 the juvenile Batten disease gene, CLN3, in Juvenile Neuronal Ceroid Lipofuscinosis (JNCL).

Recognizing the promise of BBDF-funded research, NCL Foundation

Posted in Press Releases

September 11


As I reflected on 9/11 I found a short video recounting an event I had not heard before.. The story of “the man with the red bandana”. It begins with the words, “What would you do in the last hour

Posted in A Mother's Blog by Melinda Watson

Making a difference: Beyond Batten Disease Foundation

By Amanda Koziel in Life in the Heights

Published September 2014

The Beyond Batten Disease Foundation is a foundation near and dear to many individuals and families in the Pemberton Heights neighborhood. Residents Craig and Charlotte Benson established the foundation

Posted in Media Coverage

Celebrating 5 Years of HOPE: Where There is Will, There is A Way Community gathers at annual HOPE Under the Stars Gala to Cure Fatal Disease

By Bob Gunner in The Paper

Published September 4, 2014

THE WOODLANDS, TX (September 4, 2014) – No treatment. No cure, fatal. These words began the movement of HOPE back in August of 2009 to save then 6 year old

Posted in Media Coverage


“A dream is a wish your heart makes when you’re fast asleep.” Disney may have gotten that one wrong unless as last night’s dream suggest I wish I was on a sinking ship chatting with my third grade teacher while

Posted in A Mother's Blog by Melinda Watson

The New York Stem Cell Foundation Partners with Beyond Batten Disease Foundation to Fight Juvenile Batten Disease

Batten Disease Support and Research Association collaborates to give families the opportunity to participate at its Annual Family Conference

NEW YORK, NY (July 23, 2014) – The New York Stem Cell Foundation (NYSCF) and Beyond Batten Disease Foundation (BBDF) have partnered

Posted in Latest Update, Press Releases

May 2014


Posted in Newsletter Archives



Mother Theresa once said, “ We are all pencils in the hand of a writing God who is sending a love letter to the world”.

In the wake of Run to the Sun, our fourth annual overnight relay through the

Posted in A Mother's Story by Charlotte Benson

Teen battles deadly disease, family reaching out to Michiana

By Darla Hernandez on WSBT 22

Published May 8, 2014

New challenge for teen stricken by deadly disease

There’s a new challenge for a local family we have been following since 2009.That’s when 13-year-old Tyler Allman was diagnosed

Posted in Media Coverage

Upcoming Events

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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