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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:
Blog author, Family Support Specialist, WSA Staff:
Sarah Giddings of Melbourne, FL
Email

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.

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.  Instagram handle: carmen_rosa_zegarra_jury  Phone number:  754-299-9800

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

Area of focus: adults.

Local Facebook Group:
Family Support Volunteer:
Paola Martinez of Miami, FL
Email

Areas of focus: Spanish speaking, young children, diagnosis

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

Anywhere, Anytime Virtual Fundraising Walk for Williams

Thu, 06/13/2024 - 12:00 am EDT to Sun, 12/01/2024 - 12:00 am EST

FSN - Only Child Family Support Group

Wed, 11/20/2024 - 8:00 pm EST

FSN - Parents/Caregivers of Adults with WS and Challenging Behaviors Meeting

Wed, 11/20/2024 - 8:00 pm EST

Adventure Seekers Jamboree: Thursday Hullabaloo! Nov 21

Thu, 11/21/2024 - 7:00 pm EST

FSN - Craft & Convo for Parents/Caregivers

Mon, 11/25/2024 - 8:00 pm EST

FSN - Complex Communicators and Feeding Challenges Group for Parents/Caregivers

Wed, 12/04/2024 - 8:00 pm EST

FSN - December Support Parent/Caregiver Wrap #1

Mon, 12/09/2024 - 8:00 pm EST

Adventure Seekers Jamboree: Tuesday Shenanigans! Dec 17

Tue, 12/17/2024 - 4:00 pm EST

A Family's Personal & Professional Journey with Williams Syndrome

Tue, 12/17/2024 - 6:00 pm EST

Adventure Seekers Jamboree: Thursday Hullabaloo! Dec 19

Thu, 12/19/2024 - 7:00 pm EST

FSN - December Support Parent/Caregiver Wrap #2

Mon, 12/30/2024 - 8:00 pm EST

Cruise 102: Basics and First Timers

Wed, 01/08/2025 - 8:00 pm EST

Cruise 201: Advanced Cruising

Wed, 03/05/2025 - 8:00 pm EST

Cruise 301: Last Looks and Cruising Craziness

Wed, 05/28/2025 - 8:00 pm EDT

The 2025 WSA Adventure Seekers Cruise

Sat, 06/21/2025 - 12:00 am EDT to Sat, 06/28/2025 - 12:00 am EDT

Contact us

243 Broadway Unit 9188
Newark, NJ 07104

info@williams-syndrome.org

248.244.2229
800.806.1871
248.244.2230 fax

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Position on Inclusion

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 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

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