JULIA VITARELLO

Julia Vitarello is Founder & CEO of Mila’s Miracle Foundation. Her life has taken her from Washington, DC, where she grew up, to Amherst College, where she pursued a liberal arts degree, and then to Italy, where she lived and worked for many years. She finally settled in Boulder, Colorado, where she headed a small company and started a family. Travel, language, outdoor sports, and playing with her kids were her passions. But Julia’s life took a drastic turn in December 2016 when her then six-year-old daughter Mila was diagnosed with a rare and fatal genetic condition - Batten Disease.

Upon learning that Mila’s disease had no cure and no child had ever survived it, Julia started Mila’s Miracle Foundation (MMF) to initiate and fund novel treatments. She raised nearly $5M in grass-roots efforts from over 6000 supporters, while at the same time being a mom and caregiver. In an unprecedented race against time to save her daughter, Julia collaborated alongside Dr. Timothy Yu and his team at Boston Children’s Hospital (BCH) to develop 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. What began as a race to save Mila’s life, has since turned into an opportunity to pave an entirely new treatment path for children with fatal genetic diseases.

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. In addition to running MMF, Julia co-founded the N=1 Collaborative which serves as the global scientific hub for medicines like milasen, as well as EveryONE Medicines, a biotech seeking to prove a viable business model where there currently isn’t one. Julia regularly presents at scientific meetings and conferences around the world. 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 and rare disease patient advocates alike. Driven by a sense of hope and responsibility to help other families like her own, Julia is dedicated to turning Mila’s story into a new treatment path for children across rare diseases. Her foundation is now primarily focused on the “Mila to Millions” campaign, aiming to make individualized medicines a routine way of treating rare disease worldwide.