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Home » Make Connections » Connect with your Local Community

Florida

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).

Blog author, Family Support Specialist:
Nanci Rogers, MSN, CRNA of Delray Beach, Florida
Email

Area of focus: adults

Local Facebook Group:
Family Support Specialist, WSA Staff:
Sarah Giddings of Melbourne, FL
Email

Sarah joined the WSA as staff in 2020, but has been involved since her son Matthew was diagnosed in 2003 when he was 13 months old. She has served as one of our regional chair volunteers and as a member of our board of trustees. In addition to her volunteer work with us, Sarah is a Partners in Policymaking graduate, and volunteered as a parent leader for Raising Special Kids. Her past professional positions have included leadership roles in learning and development, marketing, communications, sales, and events. She currently resides in Melbourne, FL with her husband Mike and their four children: daughter Taegon, sons Matthew (WS, born in 2002), Devyn, and Connor. In her spare time, she enjoys music, travel, crafts, and building with Lego.

Local Facebook Group:
Family Support Volunteer:
Debby Johnson of Treasure Island, Florida
Email

Areas of focus: adults, local resources, creating housing

Local Facebook Group:
Family Support Volunteer:
Carmen Jury of Miami, Florida
Email

Areas of focus: new diagnosis, school-age, Spanish speaking families

Local Facebook Group:
Family Support Volunteer:
Theresa McCray of Riviera Beach, Florida
Email

Area of focus: adults.

Local Facebook Group:

Clinics in FL

Nemours Children’s Health System Cardiac Center Williams Syndrome Program

13535 Nemours Parkway 4th Fl.
Orlando, Florida 32827

Gul H. Dadlani, MD Chief, Pediatric Cardiology
407-650-7715
Website

Upcoming Events in FL

Parents/Caregivers of Children 4 and under with WS June 2023 Meeting

Mon, 06/12/2023 - 8:00 pm EDT

Parents/Caregivers of Adults with WS and Challenging Behaviors June 2023 Meeting

Wed, 06/14/2023 - 8:00 pm EDT

Grandparent Family Support Group - June 2023

Thu, 06/15/2023 - 8:00 pm EDT

Parents/Caregivers of Individuals with WS-Autism Dual Diagnosis June 2023 Meeting

Thu, 06/22/2023 - 8:00 pm EDT

Only Child Family Support Group - June 2023

Wed, 06/28/2023 - 8:00 pm EDT

SAVE THE DATE - Adventure Seekers Plus One Trip

Thu, 09/28/2023 - 1:00 pm EDT

Contact us

243 Broadway #9188

Newark, NJ 07104

info@williams-syndrome.org

248.244.2229
800.806.1871
248.244.2230 fax

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Inclusion statement

The WSA upholds the following positions on inclusion.  We believe that:

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
  • high expectations should be the norm, and that individuals with WS and their families should decide how they best learn, work, and enjoy social settings
  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

Funding priorities

Funding priorities pie chart.

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