Area of focus: adults
The Williams Syndrome Association is organized into 19 regions across the United States. Florida is split into two regions. The western panhandle is part of the Gulf Coast region, and the rest of the state is part of the Sunshine region. Each region works to provide resource information and social and educational opportunities to its members. Volunteers are standing by in each state within the regions (parents and grandparents who can provide resources and information) to speak with new families or any families needing support. They are joined by many other volunteers who work hard to facilitate gatherings such as picnics, conferences, and fundraisers.
Below you will find the name(s) and contact email addresses of your state's Family Support Network volunteer(s).
Area of focus: adults
Sarah Giddings is currently the Interim Executive Director for the Williams Syndrome Association. Prior to this role, as the Vice President of Programs & Services she lead the development and execution of WSA programs and support services, which include the Family Support Network, scholarship programs, conventions, camps, programs to engage people with WS of all ages. She also leads the development of partnerships & a collaborative of consultants to support families impacted by Williams syndrome. She joined the WSA as staff part-time in 2020, then full time in 2021, but has been involved in the WSA for the past 20 years, after her son Matthew was diagnosed in 2003 when he was 13 months old. She has served as a WSA regional chair volunteer and as a member of our board of trustees. Prior to joining the WSA, Sarah held leadership roles in learning and development, marketing, communications, sales, events, and was sought after to help organizations during times of struggle. Sarah attended Florida State University, is a Partners in Policymaking graduate, and has served as a parent leader for other support organizations. She currently resides in Palm Bay, FL with sons Matthew (WS, born in 2002) and Connor. In her spare time, she enjoys music, travel, crafts, Disney, and building with Lego.
Areas of focus: adults, local resources, creating housing
Areas of focus: new diagnosis, school-age, Spanish speaking families. Instagram handle: carmen_rosa_zegarra_jury Phone number: 754-299-9800
Area of focus: adults.
Areas of focus: Spanish speaking, young children, diagnosis