This episode of Notable Peeps, highlights Melissa Winger—an author, speaker, and nationally recognized patient experience advocate whose story is rooted in deep personal experience.
Melissa became a mom at just 18 years old. Her son was born with a rare, unnamed chromosome disorder that affects every organ system in his body. He’s nonverbal, has undergone more than 100 surgeries, and lives with complex medical needs—including a feeding tube, brain aneurysms, and severe developmental disabilities. And yet, every day, he wakes up, puts on a costume, and finds joy in music, movement, and Sesame Street.
In the early years, Melissa was often dismissed by the medical system due to her age. She was sent home from the hospital with a newborn in critical condition and told he would "figure it out." After countless ER visits and being repeatedly ignored, it was only through the intervention of a mentor that her son finally received a proper diagnosis and urgent care.
Since then, Melissa has turned her lived experience into a mission—working on national boards, developing tools now used by EMS teams across all 50 states, and authoring a book to spark awareness and change. Her story is about more than survival; it’s about stepping up to improve the system for the next family.
In this episode, we talk about:
What it was like to become a parent while still a teenager—and how that shaped Melissa’s advocacy
The national tool she helped develop that’s now used in EMS to better communicate with patients with disabilities or language barriers
The heartbreaking but empowering decision to transition her son into a group home—and how he surprised her with his independence
Why she wrote Who Cares: A Real Look at Patient Experience during the pandemic
The gaps she sees in long-term care and why we still don’t talk enough about how people with disabilities were treated during COVID
Melissa shares how years of navigating the system gave her a voice—and how advocacy turned pain into purpose. “You can't complain about it if you're not willing to step up and do something about it,” she says. And step up, she has.
Connect with Melissa: