A singer was deeply committed to her craft, driven by a desire for perfection and the joy of performing. Then everything changed when her son was born with a genetic disorder—an unexpected and life-altering twist that reshaped her world and priorities.
Jessica Foglio is the Co-Founder and President of the Salla Treatment and Research Foundation (STAR). The STAR is a 501 (c) 3 tax-exempt charitable organization dedicated to supporting and advancing Salla disease treatments, research, education, awareness, and family networks. The Foundation was established in 2018 by Jessica and her husband Mike Foglio, to accelerate the prospects for effective medical treatments for those affected with free sialic acid storage disorders including Salla disease.
Jessica journey’s to be the lead of a patient advocacy foundation has been unique. She has both a Bachelor and Masters’s degree in Music from DePaul University and the Manhattan School of Music. Jessica then graduated from the prestigious Julliard School in New York as a classically trained opera singer and performed around the world in operas including Madame Butterfly and Don Giovanni.
The Foglios son Ben began to exhibit developmental delays, which led Jessica and Mike on a multi-year search for a diagnosis. They learned Ben had Salla disease and started working with a clinical team at the Albert Einstein College of Medicine in New York. It was there that they met Dr. Steven Walkley, Co-Director of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center. Dr Walkley and his IDDRC team encouraged Jessica and Mike to start a foundation to support families like theirs. Jessica’s background in public speaking and performance and her natural ability to bring people together helped to build a coalition of families, researchers, and donors.
Since 2018, the STAR Foundation has raised nearly $1 million and has awarded scientific grants to National Institutes of Health and research labs around the world, including CHOC. Their patient community includes 80 families from 17 countries. STAR scientific partners are the independent Free Sialic Acid Storage Disorders (FSASD) research consortium. The Consortium includes over 20 research groups from across the USA and Europe (including CHOC). Each group brings different skills and experience, to study different aspects of FSASD in a collaborative effort to speed up learning more about disease mechanisms and treatment possibilities.
In October 2024, under Jessica’s leadership, STAR was selected as a Rare As One grant recipient from Chan Zuckerberg Initiative (CZI). CZI’s Rare As One Project supports patient-led organizations across the globe by strengthening communities, building capacity, and promoting collaboration to find treatments and cures for rare diseases. With this grant award, STAR joins Rare As One’s global network of over ninety patient advocacy organizations and will receive funding, support, and mentorship over a five-year period.
In addition to her work with the STAR Foundation, Jessica owns the All-Abilities Music Studio, where she teaches music lessons to children of all abilities with a primary focus on Autism Spectrum Disorder. Jessica and Mike live in Katonah, New York with their three children, Michael, Ben, and Lily.