I’m writing to share with you an exciting announcement about how the Williams Syndrome Association hopes to reach more families than ever before, through the creation of a formal Family Support Network. I’ve spent the better part of my professional career working on political campaigns and building coalitions of donors and supporters for candidates and causes. So, naturally, when our daughter was diagnosed with Williams syndrome in 2012, we rallied doctors, educators, therapists and support professionals around her. One regret from those early days, however, was our interpretation of the words “rare diagnosis” as meaning we couldn’t also provide a community for her of individuals facing the same rare condition, and, for us, a community of families who were also navigating raising a child with Williams syndrome. The world seemed much too large for us to find another “1 in 10,000!” Perhaps the greatest gift the Williams Syndrome Association has given us is that community – a network of families to know, to love, to learn from, and to cheer for.

Initially, our connections to other individuals living with Williams syndrome were limited to those in our greater geographic community. Then, we were fortunate to attend a Williams Syndrome Association Convention where we quickly discovered that the Williams syndrome community we had built around our daughter was entirely too small – we needed to expand it to also include those navigating a similar journey and facing similar medical and educational needs and decisions. We attended convention sessions alongside families that had similar aged children and others where we noted similar visions for our children’s future. Since then, our network has grown and deepened, and we now have a much broader community we can turn to on the days when Williams syndrome brings additional challenges to address, or better: victories to celebrate. I honestly can’t imagine a world without them ­­– nor do I want to.

The WSA has grown in many ways over the past several years, and as we have grown, forefront in our minds has been the best ways to equitably reach families throughout the country. Communication strategies and opportunities have changed, as well – broad internet access and availability and social media options have made the world a much smaller place. The pandemic has also prompted the WSA to reinvent its service delivery model in innovative ways. In every aspect of our lives, we are now able to connect in ways that were not widely available just a few years ago. For the WSA, that has resulted not only in a clearer picture of the broad array of needs within our community, but also a better ability to reach out to families in new ways. This evolution leads us to our next effort to support individuals and families with Williams syndrome throughout the lifespan—the development of a broad and innovative Family Support Network.

The time is right to re-imagine the ways that we connect families and support professionals. Our volunteers—present and past board members and regional chairs, committee members, walk and event hosts, and others—have been instrumental in creating the foundation for our new Family Support Network. They have helped us build our organization into what it is today. We are reconfiguring the way we support families so that our points of contact will no longer be limited by geography, and while there will be plenty of familiar faces, there will be many new friends and resources too. We are working now to grow the communities our volunteers have fostered and create and engage numerous other networks, through virtual gatherings, webinars, social media groups, resource sharing, and, when safe, in-person events and conferences. Our regularly scheduled virtual gatherings for children and adults with WS point to the success of one new strategy, and we have planned a series of webinars and social opportunities for caregivers of individuals with Williams syndrome with more complex needs.

This is just the beginning! In the coming days and weeks, as we finalize the details of our Family Support Network, we are eager to gather your input to find out what types of connections would be most meaningful to you. Please join us for WSA Listening Sessions on Thursday, April 22nd or Saturday, May 1st to share your ideas!

The WSA once relied on postal and phone communication, supplemented when and where possible by in-person events. Reaching out by mail and phone are no longer the preferred forms of communication – replaced by social media platforms, text messages and internet searches. We now have the ability to meet our members, especially those in previously underserved communities of all types (whether geographic or demographic) with whatever communication strategy makes them most comfortable, and we plan to take advantage of this ability to provide better support.

We have the ability to connect families with others who are sharing similar journeys – not just the broad similarity of Williams syndrome in geographically similar locations, but through networks based on specific life stages or challenges along the way. As needs change, families can easily find new support in an additional community, bringing our mission of support across the lifespan to reality better than ever before. Please click on the link below to register for the session you'd like to attend.

With access to so many ways to celebrate virtually, we look forward to having an active and rewarding awareness month in May! How can you participate?

Change your Facebook profile picture for the month, using one of our custom awareness frames (including two in Spanish). Remember that if you are already using a frame, you'll want to change out your picture first (or you'll have overlapping of two frames), then go back to the new blank one and hit "find frame." They are all named with Williams Syndrome Awareness Month 2021 titles (#1-5 and Spanish and Spanish #2) and will pop up as choices with those search terms.

2021 social events will take a variety of forms as we continue to navigate COVID-19 restrictions and safety measures. Beginning in March 2020, and continuing today, the WSA has only hosted virtual events: the convention and social gatherings have all been online. As we plan 2021, it is unlikely that we will be able to safely hold traditional social events until well into the year – perhaps as late as August or early fall.

With that in mind, #Walk4Williams events will again be separate from our awareness month activities in May. We hope to have a mix of in-person walks and gatherings along with our #everywhereWSA virtual walk in late August and September.

Anyone interested in hosting an in-person walk or other in-person awareness event during the months of August and September should visit this page: https://williams-syndrome.org/events

We look forward to seeing all the wonderful ways our community will mark 2021!

With the generosity of a special donation, and a goal of reaching and including as many families as possible, we are working with a professional equity consultant to make the changes needed to ensure that we are fulfilling our values of Diversity, Equity and Inclusion.

Lauren A. Hood is a native Detroiter who is credentialed and experienced as both a community developer and equity facilitator, and holds space for otherwise difficult conversations that allow practitioners and citizen stakeholders to understand and value each other’s contributions while working toward transformational outcomes.

Lauren explains that she “employs the strategies of storytelling, visioning and relationship building to address a community’s past harms, present needs and future hopes and dreams.” We look forward to outcomes that will benefit our organization and its mission.

Lauren has conducted one-on-one meetings with WSA staff, board members, and volunteers and facilitated focus groups with people of color (POC) in the WSA membership. The processing of data is now underway, but if you identify as a POC and didn't have a chance to connect and share thoughts with Lauren through the focus groups, she invites you to do so by April 17.

Please schedule a time to chat with her via this calendar form, or by email. Lauren and the WSA would appreciate hearing from as many families as possible. Your participation, as always, builds a better WSA.

Truelove, the documentary being filmed and produced by Christopher Knight and Phil Viardo, is set to be released in the fall and final filming is underway.

Truelove features the life and experiences of Georgia teen Callie Truelove, who has Williams syndrome, and several other individuals with WS will also be highlighted. As the film heads to the post-production phase, every donation to the filmmakers will help the project stay on schedule and ensure release in time for the crucial fall film festivals. That type of valuable exposure is important to raise awareness.

Everyone who contributes will receive a digital copy of the film upon its release, and a very special thank you from Christopher, Callie and the entire documentary team!

The WSA's Whispering Trails camp weeks will be held in person (barring any new guidelines for COVID restrictions) this summer at Inspiration Hills Camp in Burbank, Ohio, southeast of Cleveland.

This four-day camp (Sunday–Thursday) features a mixture of therapy sessions and traditional camp activities along with a chance for accompanying parents to network!

Camp for the older kids is a mixture of music and arts-related classes and traditional camp activities,

Throughout the week, campers are developing confidence in their abilities, and cultivating the tools they need to express themselves and communicate with others.

Our virtual gatherings for school-aged children, teens, and adults 18+ via Zoom have been going strong and are really engaging! To register for complimentary sessions, click here.

Volunteers Emma Thomas and Emelia Baer (camp and convention volunteer leaders) have been working with the school-aged and teen groups, and have organized some fantastic virtual activities and dance parties. Each group had an opportunity to bring a sign and participate in videos that showcase who they are and what they can do, with inspiring songs as their backdrop ("Try Everything" and "This is Me"). They turned out great! If you missed them, please enjoy them below.

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