Dear Williams syndrome community,
I wanted to take a moment to tell you what an honor and privilege it is to officially be the Executive Director of the Williams Syndrome Association. This is a responsibility that I do not take lightly, as I know first hand what a tremendous impact the WSA has had on thousands of families throughout the world. Ensuring the WSA continues to provide that vital support is what we will strive to do each and every day.
There are so many things I’d love to share, as we have so much happening within the WSA and so many goals we’re working toward. But I want to start with what I’m most passionate about, and what the WSA has historically done best - helping people come together. I remember the first family picnic I attended when my son Matthew, who is now 22, was 2. It was a relatively small gathering at a public park… everyone brought food and there was a singing cowboy on horseback! I’d never met another person with Williams syndrome. I was exhausted and overwhelmed… and it was exactly where I needed to be. I learned from a local WSA volunteer that there were habilitation and respite services available (who knew??), that I needed to look into early intervention services, and that there were other families who lived close by who were walking the exact same path - that I was NOT alone! That day changed my life, Matthew’s life, and the lives of so many others in ways I’d never imagined.
The WSA connects families, provides support, and ensures that everyone knows that they’re not alone in this journey. We’ll focus on exactly that - expanding our reach and ensuring that as many families as possible have access to the WSA to come together, to connect with each other and feel that sense of community and support. The past 5 years have been full of change, which posed many challenges to coming together - from a pandemic to changes within the WSA itself. Our goals for the next two years are focused on bringing our community together. We’ll do this in many ways… by providing support through a revitalized local volunteer network, hosting our 2026 convention and planning for the next few in areas we haven’t been to recently, creating a team of therapists and support services families from all over the country can access at no cost, partnering with other organizations who provide services and support that can expand our reach, exploring new and expanded options for camps, adding more support groups, enhancing our virtual programing for adults… and that’s just the beginning!
We’re busy dreaming big here at the WSA - and we want to make sure you’re alongside us on this exciting journey! We’ll be reaching out to all of you for thoughts on what we’re doing well, what we could improve, and what we should start. Supporting you is our mission, and we are dedicated to fulfilling it every single day.
On a personal note… we’re hearing from many families that they’re concerned about the future of support and services for their loved ones with Williams syndrome. Here is what I do know - the Williams Syndrome Association is a non-partisan, safe, and inclusive community, where we embrace challenges, diversity, and differences. That will not change. As a mom, like so many others in our WS and wider disability community, I am carefully watching for changes, positive or negative, to disability law, rights, and services. Some of the organizations I monitor for information are the National Disability Institute, the National Organization for Rare Diseases (NORD), The Arc, National Down Syndrome Society, and the National Educators Association. If there are other places you feel I should also be watching, please let me know! I’m always open to learning more!
To all of our Williams syndrome families, community, partners, professionals, educators, supporters, donors, volunteers, and cheerleaders… thank you for the warm welcome, and enthusiastic words of support and trust! I’m grateful for the opportunity to provide leadership for years to come. I can’t wait to see what the future holds - and can’t wait to connect with all of you!
With gratitude,
Sarah Schaefer
Executive Director Williams Syndrome Association
PS - If you want to hear more about our goals for the next two years, check out The Starry-Eyed Podcast episode that was released today!