News

A Mother’s Story

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Photo by Catherine Sanderson | catherinesanderson.com

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

Hugs for Hudson and BBDF Join Forces

HugsForHudson

For Immediate Release Contact: Mary Beth Kiser – 512-275-2600 – mbkiser@beyondbatten.org Amy Phillips – 614-657-7707 – amy.r.phillips1@gmail.com

Columbus Family Creates Fund to Support Research for Fatal Childhood Illness: Beyond Batten Disease Foundation Announces the Addition of Hugs for

Posted in News, Press Releases

Christiane’s First Deer

First-Deer

Watch Christiane join family and friend’s as she has an exciting experience hunting in the Texas hill country.

Posted in A Mother's Story by Charlotte Benson, News

March 2016

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Posted in Newsletter Archives

December 2015

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Posted in Newsletter Archives

BBDF Funds Research at Cardiff University

November 16, 2015 – Austin, TX – Beyond Batten Disease Foundation is supporting research by Dr. Emyr Lloyd-Evans and his colleagues at the School of Biosciences at Cardiff University in Wales. The project explores a new hypothesis that has implications

Posted in Latest Update, Press Releases

BBDF Funds Researcher to Study Fundamentals of CLN3 Protein

October 19, 2015 – Austin, TX – Beyond Batten Disease Foundation (BBDF) has begun funding Susan Cotman, PhD, an Assistant Professor of Neurology at Harvard Medical School and Assistant in Neuroscience at the Massachusetts General Hospital. The focus of Dr.

Posted in Press Releases

October 2015

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Posted in Newsletter Archives

Evotec and Beyond Batten Disease Foundation collaborate to advance emerging therapies to fight juvenile Batten Disease

Hamburg, Germany – 18 October 2015: Evotec AG (Frankfurt Stock Exchange: EVT, TecDAX, ISIN: DE0005664809) today announced an EVT Execute collaboration with Beyond Batten Disease Foundation (“BBDF”) aimed at discovering and developing new treatments for juvenile Batten (CLN3) disease, a

Posted in Press Releases

Beyond Batten Disease Foundation Kicks Off the First Family Night Fundraising Event at Schlitterbahn Waterpark and Sets the Second Event for September 2016

Austin, Texas – October 5, 2015– The Beyond Batten Disease Foundation celebrated a family-fun night at Schlitterbahn in New Braunfels in September to raise funds to find treatments or a cure for juvenile Batten disease. The waterpark was closed for

Posted in Press Releases

Growing Up With a Deadline

By Maria Edible on Narratively

Published on August 10, 2015

Sammie stares out the window, where the sun is just starting to replace the rain. Around her neck: a raspberry, pig-shaped pillow. She groans faintly as her mother places a

Posted in Media Coverage

This Austin Mom Is Helping The Fight Against Batten Disease

By Abby Roddel on Austin.com

Published on July 24, 2015

Austin mom Charlotte Benson has a 12-year-old girl named Christiane who is facing an incredibly challenging life. There are no treatments yet for Christiane’s condition. No cure. She has juvenile

Posted in Media Coverage

Beyond Batten Disease Foundation announces Craig Benson’s appointment to the NRI International Advisory Board

Austin, TX – July 15, 2015 – Beyond Batten Disease Foundation (BBDF) is pleased to announce Craig Benson’s appointment to the Jan and Dan Duncan Neurological Research Institute (NRI) International Advisory Board. Consistent with BBDF’s strategy and goals to connect

Posted in Press Releases

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 Cell Biology. The lysosome biology research is leading the way to a cure for juvenile Batten Disease.

“We think this research is

Posted in Press Releases

May 2015

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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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