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.
Transcript
Graduating from the Juilliard School in 2009 was one of the greatest accomplishments of my life. My family, my small town just outside of Chicago, they were all so happy for the barber's daughter who had made it into Juilliard. By 2013, I was spending my summer singing in Seattle with my oldest son.
Life around me felt chaotic, but it was a beautiful kind of chaos filled with music and lights and costumes and nerves. I was always striving for perfection, always worrying about that one high note that would hopefully have the perfect diminuendo at the end. I wanted to make my manager proud. I wanted that perfect review from the New York Times. And I've always wondered, “Would the audience leave at intermission from boredom?”
But I thrived in that world. I've been singing professionally since I was 12, even singing with Donny Osmond in Joseph and the Amazing Technicolor Dreamcoat. At 16, I was the national anthem girl for the Chicago White Sox. And standing before a crowd, that feeling, that rush, it was magic. I was living my dream, on my terms, my destiny, and it was my direction.
And life delivered an unexpected twist. My career took a backseat when our son Ben was born. At four years old, he was still unable to walk, and my life had shifted. Little did I know this shift was more like a dramatic shove.
Ben was diagnosed with a condition that the doctors knew very little about, Salla disease. So what is Salla disease? Salla disease is a cell storage disorder where basically his body can't recycle sialic acids. These acids build up in his cells causing a whole array of issues from global delay to severe seizures, muscle deterioration, and loss of basic functions. Some children will die in infancy while others will live into adulthood. That was really all the doctors knew. But perhaps making this even worse is Ben was only one of eight known cases at the time.
So my world was shattered. The loneliness was so unbearable. There was no one to call or no one to reach out to and no one who truly understood. I didn't know it yet, but this little boy was going to lead me to a new stage and a new script and a completely new audience.
For now, though, life was filled with appointments, hearing, vision, neurology, physical therapy, occupational. Every day was a revolving door of different specialists to see. And on this particular rainy Wednesday, we were rushing, as always, to an early morning vision appointment. Strangely, that frantic pace really reminded me of racing to rehearsals in Lincoln Center. Back then, being late wasn't an option, not with the maestro and 70 union orchestra members all watching the clock for the soprano to come warmed up and ready to sing. But then I snapped back to my reality: my car, my son, and the life that I never planned for.
The rain tapped a steady rhythm on our windshield as we pulled into the parking spot in front, and the office was nestled above a shopping center. This would be the first day that I would use the new handicapped plaque, and my back was taking a toll from bringing Ben in and out of the car all the time.
His wheelchair had been ordered, but I didn't want my four‑year‑old labeled and sitting in a wheelchair. A wheelchair was the stigma that I was so afraid of. A wheelchair explained our situation and it drew attention to Ben and his disability. It screamed to the world that my perfect little boy wasn't so perfect. Sure, he was perfect to me, but I wasn't ready to use the wheelchair.
But if I look back on it, I think it was my own selfish image that I was worried about. Suddenly, Jessica wasn't so perfect. So that wheelchair stayed unused in our New York City apartment collecting dust while I pushed Ben in that stroller for as long as I could.
That day, I parked the car and I put up the plaque, took out the stroller, I took Ben out, and we walked inside to our appointment.
And the appointment went smoothly. The doctor was super nice. He told me that Ben was legally blind, but I thought to myself, “How do you know that he's legally blind if he can't tell you what he can see?” So I left with another script to see another specialist to make his glasses.
When I returned to the car, there was a damp piece of paper under the windshield. At first I thought it was a flyer until I read the words. It said, “I watched you park in this spot. I watched as you take your child out of the car and open a stroller. I watched as you easily placed him in the stroller. And you are clearly not handicapped. You should be ashamed of yourself.”
My face felt wet, not just from the rain, but from the anger and the humiliation. Who takes the time to write something like this? Didn't they understand that the plaque wasn't for me but it was for my disabled little boy?”
I looked around to see what businesses were open as it was still so early, and I could see the one right in front of our car that was open. I tapped on the glass and there was a woman sitting there at the secretary. I asked her, I said, “Did you see who wrote this note?”
And she said, “No.” And there was a man in the waiting room and he just looked at me blankly.
I said to them, “Somebody wrote me this mean note and they don't understand. It's not me who's disabled. It's my son.”
But I didn't yell. I just felt really, really sad. So I suppose I realized that this would be the first time I would have to educate others on what disability is. That it goes beyond the circumstances that are right in front of you.
Walking back to my car, I could see Ben smiling in his seat. My heart broke and melted all at the same time. Oddly, I wanted to use the wheelchair and learn to let go of the stigma. His wheelchair was not just a tool for mobility, but a quiet way to educate others on what disability is. Awareness begins with visibility, and Ben was going to open the hearts and the minds of so many people around him, and I would get to be in the front row seat to watch him in this role. I found that to be really empowering.
That day, I left with more than a vision diagnosis. I left with a Jessica diagnosis, a wake‑up call that life wasn't going to follow the script that I had written. Looking back on my performance and my performing career, it was so ego‑driven, success, validation, appearances, and all of it is so pointless when you're caring for a sick child with a rare disease.
That version of me disappeared overnight. But with grief came a strange sense of determination. I wanted my grief to manifest into something powerful. I wanted it to uplift and instill hope into others. I shifted my mindset, my heart, my expectations. Life wasn't about what I had planned for it, but it was about showing up for the story that was being written and unfolding right before me.
This musician suddenly dove into research and science and advocacy. I worked with doctors to build the first foundation for Salla disease, and we have since identified hundreds of patients. We are working with 50 researchers from all over the world and we have invested over $700,000 into five different research institutions. We're really helping to drive new discoveries.
It didn't link to my previous life and my current circumstances. We named this Salla Treatment and Research, STAR Foundation. And STAR now holds so many meanings in my life.
The story I tell today has no spotlight, but it does have light. Ben and I are the main characters and he has a purpose that I never could have imagined for him, helping other sick children like him. Together, we are writing the script and shining in the light that comes from helping others.
And I've realized this. The most beautiful performance of my life isn't about the one that earns me ovations. It's the one where the audience is the families we serve through STAR Foundation. And I still sing for the best audience of all. Ben.