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!