at Beyond Batten Disease Foundation

We are taking a swing at Batten, but we need your help today!

If you have any questions, please contact us at:

Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. Symptoms include vision loss, seizures, and eventual loss of motor function.

Amelia and Makenzie Kahn are twin sisters approaching their 7th birthdays. They live in Scottsdale, Arizona. They are embarking on a journey.

On February 10th, 2017 Amelia was diagnosed with Juvenile Batten disease. Amelia loves art, monkeys, the color purple, and her sister Makenzie.

On February 8th, 2017 Makenzie was diagnosed with vision loss and is undergoing evaluation to determine if she too has Batten disease. Makenzie loves reading, zebras, the color blue, and her sister Amelia.

Help us help all the families affected by Batten. We are closer than ever to finding a cure.