On June 3, 2023, more than 100 adults with Williams syndrome (WS), their caregivers, and staff from the MGH WS Program gathered at the Lurie Center for the inaugural program family event, “Navigating Adulthood.” The event was a celebration of the first year of the expanded MGH WS Program which was possible due to a generous gift from the Bernon family.
The day began with comments from Dr. Mary Van Haneghan, the Executive Director of the Williams Syndrome Association, and a welcome to the Lurie Center by Dr. Christopher McDougle (Director of the Lurie Center). Attendees were introduced to the MGH Williams Syndrome Program by Drs. Barbara Pober and Robyn Thom (co-Directors of the MGH Williams Syndrome Program) including its three-part mission of 1) compassionate, multidisciplinary care across the lifespan; 2) resources and education for the WS community; and 3) advancing research and scientific knowledge about WS.
Educational talks included an overview of cardiovascular concerns in adults with WS by Dr. Christopher Learn (Director of the MGH Adult Congenital Heart Disease Program) and residential housing options by Catherine Boyle, MA, CGS (President of Autism Housing Pathways). Dr. Learn reviewed cardiac interventions, anesthesia risks, management of hypertension, and prolonged QTc in adults with WS. Ms. Boyle provided a “roadmap” for securing residential housing. Additional key takeaways from her talk included recommendations: To start at least 5-10 years in advance of the desired placement date; work on skill development early; identify systems and supports to address the skills the person won’t be able to perform independently; an overview of governmental services/supports; and the acknowledgement that additional (private pay or unpaid support from family and friends) is typically needed. The day concluded with a Q&A panel as well as discussion of growth opportunities for the Program.
Musical entertainment was provided by the Berkshire Hills Music Academy “Jazz Ensemble” and “The Capabilities” bands.
We thank Bonnie Moran and volunteers for hosting the games hour for adults with WS.
“Navigating Adulthood” was possible due to the generous support from: The Bernon Family, The Williams Syndrome Association, The MGH Development Office, The Lurie Center for Autism.