Get regular updates to your inbox.
As Thanksgiving approaches, the air is filled with a sense of warmth and an invitation to reflect. This time of year invites us to pause and appreciate the little things that make life beautiful, even amidst the challenges we face. Our family, though small, is tightly knit, and this…
Read more
My story begins with my most precious gift: my son. Like any mother, I dreamed that his future would be filled with laughter, adventures, and boundless possibilities. However, our reality took a sharp turn when Juju, my son, was diagnosed with late-infantile Batten disease (CLN2 disease), a rare and devastating…
Becoming educated and informed about Batten disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Batten disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
Get regular updates to your inbox.
