Hayden's Batten Disease Foundation

Hayden's Batten Disease Foundation is a non-profit organization dedicated to finding a cure for CLN3 Batten disease, also known as Juvenile Neuronal Ceroid Lipofuscinosis. Established in 2009 following the diagnosis of Hayden Lord, the foundation focuses on raising awareness and funding critical research to accelerate the development of effective treatments. They have played a significant role in supporting clinical trials, including studies involving Miglustat, and advancing gene therapy research at leading academic institutions. By partnering with other advocacy groups and researchers, the foundation aims to provide hope and tangible medical progress for families affected by this rare, fatal neurodegenerative disorder. Their efforts are primarily funded through community events and private donations.