Family Liaison Spotlight
“I am a 32-year-old adult with CHARGE syndrome who lives independently with my dog Cupcake. I work as a school nurse at Sunshine Children’s Home and Rehab Center, a pediatric long-term care facility serving medically complex children, and I hold a bachelor’s degree in Public Health from Monroe University. CHARGE syndrome has always impacted—and will continue to impact—my health and daily functioning, requiring ongoing self-advocacy and support.
I volunteer with the CHARGE Syndrome Foundation because lived experience matters, especially within complex systems like those in New York. As an adult with CHARGE syndrome, I understand how isolating it can be when individuals and families are navigating healthcare, education, and state services—particularly during the transition into adulthood.”
Adults with CHARGE Spotlight
“I learned at an early age how to move through a world that often felt out of rhythm with my senses. Vision along with hearing challenges shaped my days, yet they also taught me to slow down, notice small details, as well as trust steady work. Those lessons shaped my writing long before I knew I would call myself a writer.
My story “The Space Between Then and Now” appears in The Prairie Light Review (click here to read it). It follows two childhood friends from Mexico who meet again in Chicago after many years apart. A simple cup of coffee pulls them back to the years they shared and the distance they carry. The story moves through gestures and memory, much like the ways many of us with CHARGE build connection across gaps.”
