Mila’s Miracle Foundation

Mila’s Miracle Foundation to Stop Batten was formed in December 2016 upon learning our daughter Mila had Batten Disease: a fatal, devastating genetic disease. We now realize that Mila’s life has a greater purpose than we had ever imagined when she was born. Our hope is that her spark will ignite others, and one day soon there will be a bright light where there was once just darkness. The mission of Mila’s Miracle Foundation is to find and fund paths to a cure for Batten and other neurodegenerative diseases. Families in this community have been pivotal in raising the necessary funds and awareness. Together with our incredible scientists and partner organizations, we hope that our work will improve the prognosis of Batten disease and other neurodegenerative diseases. Through our fundraising – which includes grassroots efforts, individuals and family foundations, and events – we have started two genetic therapy trials (one underway, the other still in the pre-clinical phase) as well as fund scientists focused on bench research to understand the underlying causes and indications of CLN7 Batten disease. Our hope is that our work will give Mila and many others like her a second chance at life.