Mila’s Miracle Foundation
Boulder, CO, USA
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 devastating fatal genetic condition. In a race against time, Julia raised the funds to support the science in grass-roots efforts, from over 7000 supporters in 60 countries, while at the same time being a mother and caregiver. In an unprecedented collaboration led by Julia and Dr. Timothy Yu from Boston Children’s Hospital, Mila became the first person in the world to receive a drug tailored to just one person - named milasen. Driven by a sense of hope and obligation, Julia is on a mission to open up the new field of individualized medicine and make it accessible to children across all rare diseases who otherwise would have no hope.
Through MMF, Julia also initiated the work toward a novel gene replacement therapy targeting the MFSD8/Batten CLN7 gene which began in 2021, launched the Batten and Neurodegenerative Disease Clinic at Children's Hospital Colorado, and funds basic science projects in the US and Europe. She co-hosts the weekly show, Gene-Fixers on Clubhouse, launched the photo journal This is Today and speaks at scientific meetings and conferences across the country.