Nearly twenty years ago, a determined group of parents in San Diego set out to solve a critical problem: children with Down syndrome had no access to coordinated, multidisciplinary medical services anywhere in Southern California. Families were navigating complex care on their own. Specialists were scattered across locations. Families faced long wait times and no central support system to guide them.
Then came a group of parents determined to change that.
Among them was Sharla Hank, a mother driven by both personal experience and purpose. DS Action was born, a grassroots force committed to improving the lives of children with Down syndrome.
“We met with Rady Children’s Hospital San Diego leadership, and everyone agreed it was a great idea,” recalls Sharla, co-founder and current president of DS Action, the nonprofit that ultimately helped launch the center. “But we were told, ‘We don’t have the money, the resources or the space.’ Coming from a sales background, I said, ‘Then we’ll find them.’ And we did.”
In less than a year, the Down Syndrome Center at Rady Children’s opened. It was Southern California’s first and only the second clinic of its kind statewide. Today, almost 20 years later, that original partnership has flourished and the center now stands as one of the largest multidisciplinary Down syndrome clinics in the country.
Lauren Gist, MD, MPH, director of the Down Syndrome Center at Rady Children’s, leads the program with expertise in developmental and behavioral pediatrics. She has a deep personal commitment to meeting families exactly where they are.
Families come to us at different moments,” says Dr. Gist. “Some are overwhelmed, some are searching for clarity and some simply need reassurance. Wherever they are, we meet them with compassion and expertise. We meet them with team-based, or multidisciplinary, care. Rady Children’s is truly unique in that way.”
Coordinated, Compassionate Care Under One Roof
The Down Syndrome Center brings together specialists from a wide range of disciplines, including cardiology, nutrition, occupational therapy, physical therapy, speech-language pathology, social work, genetics, behavioral health and more.
“At our clinic, we look at the whole person,” says Dr. Gist. “We review their medical needs, their development, their relationships. We try to better understand the unique way they engage with the world. The multidisciplinary model gives families a place where all of that can be understood together.”
As part of this multidisciplinary model, the center also recently welcomed José Silva Sepulveda, MD, a cardiologist at Rady Children’s and parent of a child with Down syndrome. His expertise adds tremendous value to the team, particularly because nearly half of children with Down syndrome are born with congenital heart conditions.
“When a family hears that their baby has a heart condition, as well as Down Syndrome, the weight of that moment is unforgettable,” says Dr. Sepulveda. “I’ve lived that experience myself, not just as a cardiologist but as a parent, and I know how quickly hope can be overshadowed by fear. My goal is to guide families through those first overwhelming steps with clarity, honesty and compassion.”
Sustaining the Mission
As the center approaches its 20th anniversary in 2028, DS Action continues to play an essential role. The nonprofit funds all non-physician services, support that insurance does not cover. This means therapies, case management, nutrition, behavioral support, dental services and more remain accessible to families regardless of financial barriers.
“I want to thank Dr. Gist and DS Action for their leadership,” adds Dr. Sepulveda. “They have created a truly safe and supportive space for patients and families. As a parent, I can say that Dr. Gist has made a meaningful difference for our family by guiding us through my daughter’s diagnosis, helping coordinate the care she needs and consistently advocating for her and for all patients.”
Looking Ahead
Beyond clinical care, DS Action strengthens the broader community through year-round events, including the annual Comedy Ball, spring golf tournament, citywide Down Syndrome Awareness Month in October and the March 21 “Trisomy 21 Day” celebration that brings together all three San Diego Down syndrome organizations.
“We built this from love,” Sharla reflects. “Now it’s about ensuring it lasts for the next generation of families walking through those doors for the first time, feeling that same sense of relief and hope.”