Founder & Chief Executive Officer
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 in the first year of treatment, Mila’s disease slowly continued to progress. In February 2021, Mila’s spirit left her body. Driven by a sense of hope and responsibility, Julia is on a mission to turn the groundbreaking work that went into milasen into a promising platform solution to the drastic problem of rare disease in children.
In her quest to open up the field of individualized medicines for rare disease which Mila pioneered, Julia has created a strong global following of Mila’s story. To date, Julia has raised nearly $5M in grass-roots efforts from over 6000 supporters, while at the same time being a mom and caregiver. She 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 has also initiated the work toward an ongoing novel gene replacement therapy trial targeting Mila’s variant of Batten (CLN7), launched a Batten and Neurodegenerative Disease Clinic at Children’s Hospital Colorado, funded basic science, and hosted scientific meetings.
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Thursday, March 17, 2022
2:30 PM – 3:30 PM ET
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