The Department of Neurology’s Cerebral Palsy Center is hosting its inaugural Cerebral Palsy Family Day on June 24, 2023, at the Missouri Botanical Gardens.
The event originated when a family previously seen in the Cerebral Palsy (CP) Center provided the center with a generous donation. The donor’s wishes were for caregivers of individuals with CP to have access to one another and resources that optimize the journey from diagnosis to independence. When the CP Center polled its families to see what they would value, they reported the same wishes: to connect with one another and local resources that can make their daily lives easier.
The goal of the day is to foster connection and empowerment within the CP community.
Kelsey Steffen, the lead event organizer and research coordinator for the CP Center, said, “Medical clinics that specialize in specific disabilities have a unique opportunity to connect caregivers with similar experiences. Bringing together our families for learning opportunities allows us to further learn about and improve how we address their needs.”
The event was co-planned with Christopher R.J. Worth and Kelly Moffatt, both individuals with CP and prominent activists for the disability community in St. Louis.
Moffatt said the CP community needs allies and more chances for connection. “We need people of all different backgrounds to be part of the knowledge base and expertise that informs the progress of our community.”
Worth wants the day to help bring about a shift in people’s way of thinking. “We aren’t just aiming for universal access – we want universal thinking. It’s important that caregivers start visualizing how their role can shift to supporter so their child can become as independent as possible,” he said. “Ultimately, we hope caregivers see that their child’s independence is a really a kind of interdependence.”
Learning will be led by community partners from various disciplines with a common goal — improve the lives of individuals with disabilities. Caregivers will explore how to navigate state and federally-funded support while having the opportunity to visualize and plan for their child’s future.
Thanks to the Missouri Botanical Garden, children with CP and their siblings will have several fun and accessible activities to engage in while their caregivers connect and learn. These activities include exploring the fully wheelchair accessible sensory garden, the children’s garden where they’ll get to play music led by Different Dynamics and an accessible-form of bocce ball led by the Disabled Athletes Sports Association.
Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist and Research Director of the CP Center who helped Steffen organize this event said the mission of the St. Louis Children’s Hospital Cerebral Palsy and Mobility Center is to provide care in collaboration with medical professionals, researchers and the community so people with motor disabilities can best identify and reach their mobility goals.
“This event is the epitome of that mission,” Aravamuthan said. “We hope that our CP Center Family Day can serve as a gold standard template for community engagement for other CP centers and children’s hospitals across the country. ”
If you are interested in donating to the Department of Neurology or Washington University Medical School in St. Louis, visit our giving page for more information.