Louis have described the neurodegeneration that occurs in the nervous system of the bowel in Batten disease ... and would die in childhood. But the parents told Cooper they felt unprepared ...

Today, the Born and Schneider family announced the launch of Helen’s Pink Sky Foundation, a new nonprofit dedicated to accelerating research, raising awareness, and improving the lives of those ...

Batten disease is a rare, genetically inherited ... and all the magical things that childhood should be filled with, " said Nick Schneider, Helen's uncle, a founding member of the Helen's Pink ...

The foundation is committed to funding groundbreaking research aimed at both finding a cure for Batten disease and supporting patients and their families with essential resources. Batten disease ...