A Message from Executive Director, Sarah Schaefer
Hi everyone,
It’s hard to believe we’re already at the end of 2025. For all of us at the WSA, it’s certainly been a whirlwind of a year, full of learning, change, and growth. I want to take a moment to thank everyone who has made this year a success—countless volunteers and consultants, the medical professionals in our Clinical Consortium, doctors and researchers throughout the world, our Board of Trustees, our donors, and each and every one of you!
To Rebekah Pagis, Clancey Hopper, Meredith Greene, and Danielle Shockey, who end their board service this year—thank you for the time, insight, and dedication you brought to the Board during your tenure. To Bill Palmer, who concludes his time as Board President—thank you for your leadership during this period of transition. To Susannah Morgan, who has so generously donated her time and wisdom to support both the Board and me during my transition to the role of Executive Director—you truly have been a game changer and a sanity saver. To the WSA staff - you’ve been incredible partners during this often challenging year that would have been truly impossible without each and every one of you. And to my family—thank you for your patience, support, and constant cheerleading as I’ve navigated this year (and a few before that!). I love you, and I couldn’t do it without you.
I’m incredibly excited about what 2026 has in store! You’ll learn much more about all of this next year, but here’s a quick preview:
2026 International Convention in Buffalo/Niagara, NY! Mark your calendars for July 7–11, 2026, as the WSA takes over Buffalo! Watch the website at williams-syndrome.org/convention early next year as we begin adding more information. Hotel registration will open on January 7 at noon ET.
The WSA Knowledge Network will bring together and expand areas of expertise the Association has long provided, now under a single, more comprehensive framework. Led by Robin Pegg, Ed.D., the Knowledge Network will build on years of access to educational consultants, speech-language therapists, and IEP and transition specialists, while significantly broadening both the number of professionals involved and the range of services offered. These expanded areas will include occupational therapy, grief and couples support, music therapy, and other therapeutic services. The goal is simple and essential: to ensure that every person with Williams syndrome can access the experts they need to thrive, regardless of a family’s ability to pay.
Expanded support and research around loss and grief: A special report on Sudden Cardiac Death is being created as a collaborative effort of our WS Clinical Consortium, experts and researchers in cardiology and anesthesiology, and the WSA, and will be released as soon as it is approved for publication. Additionally, we’ll partner with families who have lost someone with WS to gather data to help study death in WS and to provide grief support. We’ll also launch a program to help families plan ahead for this unthinkable situation by creating a process to think through issues such as advance directives and organ donation.
We’ll bring greater clarity and focus to our virtual social offerings through the WSA Social Club, which now serves as the home for all virtual social gatherings for adults with Williams syndrome. This change allows for more intentional, topic-based spaces for connection, while the Adventure Seekers program returns to its roots, focusing on in-person travel experiences. (And we’ll announce a 2027 Adventure Seekers trip during the second half of 2026!)
The new WSA Family Network will further strengthen this work by expanding local, community-based support for families across the country. We’ll share more about this program, how you can get involved, and how it will support families in spring 2026.
And that is just the beginning! Until then, I hope you’re able to find a few quiet moments to enjoy the spirit of this time of year and rest your body and mind. From all of us here at the Williams Syndrome Association, we wish you and your loved ones the happiest of holidays and a healthy, happy 2026!
With deep appreciation,
Sarah
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