What is Batten disease?

Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. The first symptom is usually progressive vision loss in previously healthy children followed by personality changes, behavioral problems and slow learning. Seizures commonly appear within 2-4 years of vision loss. However, seizures and psychosis can appear at any time during the course of disease. Progressive loss of motor functions (movement and speech) start with clumsiness, stumbling and Parkinson-like symptoms; eventually, those affected become wheelchair-bound, are bedridden, and die prematurely.

Family Stories

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Meet the Bensons

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Meet the Herndons

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Meet the Watsons

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Meet the Allmans

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Meet the Sikorras

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Meet the Mitzels

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A Mother's Story

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.

Share Your Story

What started as the inspiration of one child has now become the voice for all people affected by juvenile Batten disease.

Share your story with us and let your voice be heard.

Batten Map

If your child has been diagnosed with juvenile Batten disease, please know that you are not facing this challenge alone.

This map shows the location of other families affected by Batten disease from around the world.

Get Involved

Upcoming Events

Family Night »

Sept 25, 2016
Join us for Family Night at Schlitterbahn!

HOPE Under the Stars »

Sept 10, 2016
Join us for an inspirational evening and plan to stay for the HOPE After party featuring DJ Lucy!

Fundraise

Would you like to run a marathon or complete a triathlon? Sponsor a golf tournament? Host a dinner party? Have your friends and family make a donation in honor of your birthday or other special occasion? By joining Beyond Batten Disease Foundation, your effort can help us reach a bigger audience and move closer to our goal of eradicating Batten disease.

Donate

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