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 (BCH) led to the first ever drug tailored to just one person, affectionately named milasen. After showing great promise in the first year of treatment, Mila’s disease slowly continued to progress. In February 2021, Mila’s big spirit left her little body. Driven by a sense of hope and responsibility, Julia is on a mission to turn the groundbreaking work that went into an impactful solution to the global health crisis of rare disease in children.
In her quest to open up the field of individualized medicines which Mila pioneered, Julia has engaged academics, biotechs, government and foundations in this space and created a global following of Mila’s story. On top of her work running MMF, Julia co-founded the N=1 Collaborative which serves as the global scientific hub for medicines like milasen, as well as a biotech aiming to prove a viable business model to make individualized medicines sustainable. Julia regularly presents at scientific meetings and conferences across the country. In collaboration with fellow rare disease foundations, she initiated the work toward an ongoing novel gene replacement therapy trial targeting Mila’s variant of Batten (CLN7) and a Neurodegenerative Disease Clinic at Children’s Hospital Colorado. Through MMF, Julia co-runs the first-ever single cell atlas of pediatric disease with BCH, funds basic science research in the US and Europe, and hosts meetings with industry experts, families and change-makers. Julia is focused on moving “From Mila to Millions”, making individualized medicines routine worldwide.