A Message from Executive Director, Sarah Schaefer
Hello WSA Family,
As we enter this week of Thanksgiving, I want to pause and express my deepest gratitude. Our community has faced incredibly difficult times recently, and families are having conversations about topics no one wants to discuss—like losing a loved one to sudden cardiac death. And yet, in every moment, I am reminded why we call this a family. In times when it’s easy, in times that are harder than I could have ever imagined, in moments of triumph, and in seasons of overwhelming grief, this community shows up with love, strength, and compassion.
Having a child with Williams syndrome changed my life in ways I never could have anticipated, reshaping how I see the world, what I value, and the depth of empathy and purpose I bring to this work. Leading this organization is a responsibility I never take lightly, and I remain profoundly grateful to be walking alongside all of you. Your strength, courage, tenacity, and generosity inspire me every day. We couldn’t do any of what we do without you—and we do it for you.
Even when things feel incredibly challenging, I hope you’ll take a moment to pause, breathe, and find one thing you’re grateful for today. And please remember: the WSA is here to support you, every step of the way.
I also want to take this opportunity to share the following message that I emailed to all of our members last Friday. I want to ensure that everyone has multiple opportunities to see it, understand the context, and know exactly where we stand as an organization.
A Message to the WSA Community On Recent Losses and Sudden Cardiac Death
The Williams syndrome community has faced several heartbreaking events recently, including a number of sudden cardiac deaths. We grieve each person we’ve lost, and we extend our deepest sympathies to their families and loved ones during this profoundly difficult time.
Many of you have reached out to me directly with your concerns. As the parent of a young adult with Williams syndrome, my son Matthew, I understand how frightening and powerless this feels. Your need for guidance and support is our highest priority.
Taking a deep collective breath and looking at the facts may help steady us. Our medical advisors, including Drs. Barbara Pober, Beth Kozel, Mark Levin, and many others, are among the world’s leading experts in Williams syndrome clinical care and research. They have confirmed that, while several losses have occurred close together, no data currently exists to indicate something new is happening or that there has been a significant increase in the overall number of deaths. However, the possibility of a change in the death rate should be investigated, and the WSA believes systematic inquiry is the most important step in addressing this question. Accordingly, we are working with them, and other WS experts, to ensure that families and clinicians have the most up to date, evidenced-based information available. As soon as our review is completed, the Williams Syndrome Association will release a special report focused specifically on sudden cardiac death in Williams syndrome. This is a complex issue, and our goal is to provide accurate, actionable, and up-to-date guidance for the entire community.
This has long been an area of major WSA commitment. Recently, in partnership with Camille Fortunato and the AGF Research Fund, the WSA invested more than $600,000 in advanced medical equipment to further Dr. Mark Levin’s research in this area. Additionally, the WSA is supporting the Legacy Project through the Collaborative Registry for Williams Syndrome (CReWS), an initiative being led by Dr. Jessican Bowman, which focuses on collecting data regarding death. We are working tirelessly to push this research forward, though it’s important to keep in mind that meaningful research and scientific progress takes time.
Social media amplifies awareness of every loss, whether related to sudden death or not, and we have to be cautious to not allow fear to take hold. What we can do is focus on gathering rigorous, high-quality data to better understand the frequency and causes of these deaths. Careful data collection and systematic review are essential, and this is work the WSA is actively advancing.
If you are looking for immediate steps you can take, I have a few recommendations.
Stay connected to reliable information. Be sure you are a member of the WSA.Membership is free, and it ensures you receive newsletters and updates, which, combined with the website, are the best sources of quality information on Williams syndrome. If you think you’re a member, but you’re not receiving our emails, check your spam or join again!
Enroll in CReWS. Just as important, please enroll your loved one in the Collaborative Registry for Williams Syndrome (CReWS). CreWS, which launched just a few years ago, is a database that collects essential information from both families and the Williams syndrome clinics throughout the US. Data is a cornerstone for moving research forward. If you feel you are enrolled but haven’t been receiving survey emails, please check your junk mail folder for emails with “Collaborative Registry for Williams Syndrome” in the title, or from the email address crews@cumc.columbia.edu. You can also reach out to Michele Disco, the study coordinator, to verify your enrollment.
Verify and communicate. Finally, don’t assume that information shared on social media is complete, accurate, or something the WSA has been monitoring. While social media can be an incredible tool for connection, social posts reflect one person’s experience; they are not vetted medical guidance and should never replace clinical advice or official WSA communications. Whether you have a question, are unsure about work already underway, want to share information we should know, or need accurate, fact-based guidance, please reach out to the WSA.We are here to support you.
We have always described the WSA as a family, and families pull together during difficult times. Our strength comes from supporting one another, sharing what we know, and showing compassion and respect for families mourning the loss of a loved one.
I will continue to provide updates on sudden cardiac death and on the broader research, planning, data-collection, and grief-support efforts that are already underway. If you have questions or concerns, reach out directly: email sarah@williams-syndrome.org, text or call me at 248-509-0060, or contact the WSA office.
Happy Thanksgiving, to you and yours, from all of us at the WSA.
With deep appreciation,
Sarah
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