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Some mornings I wake up and wonder what it would feel like to breathe without urgency. To pour a cup of coffee without checking a seizure monitor. To not have my heart in my throat while waiting for a doctor to call me back. I wonder what it would…
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A personalized treatment called Zebronkysen led to gains in function for twin girls with juvenile Batten disease in a clinical study, surpassing the expectations of researchers who had hoped merely to slow disease progression. “We did not expect to see improvement in addition to a slowing of decline,” Yael…
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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