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.

Share your story and let your voice be heard. By connecting our community, we strengthen our voice.

Please fill out this form and we will add your family to the map. Only your child’s first name, last initial, form of Batten disease, city and state will be shared. If you have special instructions for what information to share, please include in the Share Your Story field.

For more information about being involved in our community and mission, email info@beyondbatten.org or call (512) 275-2600.

Would you like to submit a Batten map profile?

Parent First Name (required)

Parent Last Name (required)

Email Address (required)

Child's Name (required)

Child's Birthdate (MM/DD/YYYY)

Child's Gender (required)
FemaleMale

Type of Batten

Affected Gene (if known)

City (required)

State/Province (required)

Country (required)

Share Your Story (optional)

Upload a picture of your child (optional)