The WSA's Family Support Network is a nationwide network of WSA members (parents/relatives/caregivers/professionals) who want to connect, and help others connect with “communities within our community”. These communities may be based on simple demographics such as age or gender of son/daughter with WS, ethnicity, developmental and life stages, medical, emotional or educational issues, or even your place of residence -- all under the broad premise of “see a need, fill a need.” 

Volunteers with a special expertise/interest in various groups are needed to help facilitate Zooms and lead discussions. There are two types of Family Support Network volunteers:

  • Family Support Specialist: Volunteers who support local families in several ways, including being the first point of contact locally when a family receives a diagnosis or moves into the area, providing information about local resources, and hosting social events for local families.
  • Family Support Volunteer: Anyone who volunteers to support other families, either locally or virtually, in a specific way. For example: connecting with other families, leading a virtual networking group, or hosting an occasional social event.

If you're interested in volunteering in our Family Support Network, contact the national office or email
familysupport@williams-syndrome.org.

FAMILY SUPPORT NETWORK PROGRAMS

Family Support Networking Groups

Our topic-specific networking groups allow parents and caregivers of people with Williams syndrome who have a specific need to meet and discuss challenges and strategies. These groups meet virtually on a regular basis -  monthly, bimonthly, or quarterly, with the frequency set by the participants. The groups are facilitated by a WSA staff member, Family Support Volunteer, or professional in the specific area of focus. Groups are being created based on the needs in our WS community. Check the Events calendar to sign up to attend an upcoming meeting if these topics are applicable to you.

Current groups:

  • Parents/caregivers of children with a dual diagnosis of Williams syndrome and Autism
  • Parents/caregivers of adults with a dual diagnosis of Williams syndrome and Autism
  • Parents/caregivers of children with anxiety
  • Parents/caregivers of adults with anxiety
  • Parents/caregivers of adults with challenging behaviors and/or moods

Groups coming in 2022:

  • Parents/caregivers of children with feeding issues
  • Parents/caregivers of complex communicators
  • Parents/caregivers whose only child has Williams syndrome
  • Additional groups TBD

If you would like to join one of these networking groups or request that a specific support group be formed, please contact us or email familysupport@williams-syndrome.org.

Family Support Forum

The Family Support Forum is a place here on the WSA website for you to post and answer questions about Williams syndrome, and to connect with others who have similar journeys and experiences. 

Questions arise for all of us throughout our journey with Williams syndrome. The Family Support Forum is a place to post your questions and learn from others who have walked in your shoes. No two journeys with Williams syndrome will be exactly alike, but it is very likely that any specific issue we may have, has been experienced by others, and we can all learn from each other. With that in mind, each time you come to the forum to ask a question, be sure to look for questions from others that you have experienced. Your insights and suggestions are sure to be helpful.

All users must create an account, which the WSA staff will approve after verifying their membership, and users must log in to read or participate in a discussion. 

There are two sections of the forum:

  • Williams Syndrome Q&A:  We have created broad topics for you to post within and provided questions that we often receive along with answers that are "generally" correct. Your specific answer to the same question will help folks gain a broader understanding of the variability that they may see within each issue. Please don't hesitate to provide a response to any question that may resonate with you. 
  • Family Support Discussion Groups: These discussions allow you to directly connect with others with similar roles, interests, or needs, in a more direct way. You’ll find groups like WS/ASD Dual Diagnosis, Grandparent Connection, Sibling Connection, Parenting & Self Care, LGBTQ2AS+, and Cultural Connection. 

Click here to request your Family Support Forum account, or click Forums in the top menu of the website. You can visit the Forum Help Center for questions on how to post, comment, update your profile, or set notifications. This can also be accessed from the bottom of each page in the forum. Want to see a new Forum topic created? Just let us know by emailing familysupport@williams-syndrome.org.

Family Support Network - Local Connections

The Williams Syndrome Association is organized into 19 regions across the United States. Each region works to provide resource information and social and educational opportunities to its members. Volunteers (parents and grandparents who can provide resources and information) have been identified in each state to help provide personal information and support. These Family Support Network volunteers are joined by many others who work hard to facilitate annual gatherings such as picnics, conferences, and fundraising events. To connect with your local WS community or a Family Support Volunteer near you, visit the Local Connections page.