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

Cypress family fights to eradicate Batten disease

by Crystal Simmons in The Potpourri – Magnolia Edition

published April 21, 2014

In 1998, Luke Watson was a normal kindergartner who loved Aggie sports and watching ballgames with his dad. His younger sister Rachel loved animals, jewelry and art.

Posted in Media Coverage

Longhorns Run Through the Night to Fight Rare Disease

by Chris O’Connell in Alcalde

published April 22, 2014

Christiane Benson is like any other 11-year-old. She likes cooking scrambled eggs, playing the piano, and running around outside with her younger brother Garland and their dogs. But when it comes time

Posted in Media Coverage

Cypress family fights to eradicate Batten disease


LRBF article published in The Potpourri, Magnolia Edition

Read the article »

Posted in A Mother's Blog by Melinda Watson

Austin Teacher Uniting Staff with The Run to the Sun Relay to Support Student

by Alexa Harris in Austin Fit Magazine

published April 18, 2014

Later this month, a group of teachers from Casis Elementary will be participating in The Run to the Sun Relay, a race that benefits Batten disease, a fatal disease

Posted in Media Coverage

Overnight Relay from Enchanted Rock to Austin to Save Lives

published in April issue of Tarrytown Newsletter

Click here to view the newsletter

Posted in Media Coverage

Mark Shultz, Ph.D – BBDF’s first graduating doctor


Your generous donations are supporting inspiring and promising researchers who are committing their careers to finding a cure for Batten disease. Mark Schultz is one such researcher who recently graduated with a Ph.D. with the help of BBDF funding in

Posted in Latest Update

Local boy to be honored at relay to find cure for his fatal disease

published on March 25, 2014 in Woodlands Online

THE WOODLANDS, Texas–Rarity is the greatest challenge orphan diseases face. Affected patients are spread out across the country and around the world. Less than 100 children in the United States suffer from

Posted in Media Coverage

Upcoming Events

Save the Date
HOPE Under the Stars
September 20 Find out more »
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.

Invite Charlotte to speak at your next event »
Sign Up to Receive Important Updates
Your Email: