People often tell me how strong I am. They see the advocacy, the interviews, the meetings, and the columns I continue writing after my son Juju gained his wings in May. They see me speaking about his CLN2 disease, also known as late infantile Batten disease, with determination and…
Discussion
Every Batten disease parent learns that time is the most valuable thing we have. We stop measuring life by birthdays and holidays and begin measuring it by the memories we can still make before the disease changes everything again. Every smile, laugh, and hug becomes priceless. No amount of…
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.
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