Julia Vitarello

Founder & Chief Executive Officer, Mila’s Mom, Mila’s Miracle Foundation

In December 2016, Julia founded Mila's Miracle Foundation (MMF) upon learning that her seemingly healthy six-year-old daughter, Mila had Batten disease, a fatal genetic condition with no cure. In an unprecedented race against time to save her daughter, Julia’s collaboration with Dr. Timothy Yu from Boston Children’s Hospital led to the first ever drug tailored to just one person, affectionately named milasen. After showing great promise by stopping her disease and allowing for improvements, Mila’s disease eventually progressed and in February 2021, Mila’s spirit left her body. Driven by a sense of hope and responsibility, Julia is on a mission to open up the field of individualized medicines, which Mila pioneered, in hopes of solving the global health crisis of rare disease in children.

Since creating a strong global following of Mila’s story, Julia regularly engages scientists, academic and government institutions, biotechs, and patient advocates, as well as presents at scientific meetings and conferences across the country. Through MMF, Julia also initiated the work toward an ongoing novel gene therapy trial targeting Mila’s variant of Batten (CLN7) and launched a Batten and Neurodegenerative Disease Clinic at Children’s Hospital Colorado while continuing to fund basic science research and host scientific meetings.