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As a newly established non-profit organization, Helen’s Pink Sky Foundation is dedicated to advancing research and providing support for individuals and families affected by Batten disease, a rare and devastating neurodegenerative disorder. The charitable organization was founded in response to three-year-old Helen Born’s diagnosis with Late Infantile Batten Disease (CLN2).
Batten Disease causes progressive neurological deterioration, including vision loss, seizures, and cognitive decline. It currently has no cure, though existing therapies can modestly slow its progression. Helen’s Pink Sky Foundation seeks to accelerate the development of innovative treatments, including gene therapy and enzyme replacement approaches, while also offering resources to families affected by the neurodegenerative disorder. By funding scientific research and fostering community support networks, the organization aims to improve both the quality of life and the long-term outcomes for patients.
Image Credit: Helen’s Pink Sky Foundation
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