The year did not ease in gently for our family. January came in loud and demanding, reminding families like mine that a new year does not promise a clean slate. Instead, it brings more charts, more hospital rooms, and yet another recalibration of what normal looks like. The day after…
Miglustat, an investigational oral medication currently in early clinical testing for Batten disease, was tolerated well in a small study that evaluated the therapy in six people with juvenile Batten disease. Trial data indicate that the miglustat-treated patients had a slower rate of progression in physical impairment than…
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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