A Message from Executive Director, Sarah Schaefer
Hi everyone,
Fall is nearly here, and with it come some of my favorite things—beautiful leaves, cooler weather, all things apple cider and pumpkin spice…and, admittedly, one of the more stressful times of year for many of us: back-to-school season.
For parents of children with an IEP or 504 plan, shopping for supplies, clothes, and a new backpack is often the easy part. The real work is ensuring that your child or young adult with Williams syndrome has the support they need to thrive at school. That’s where the WSA comes in.
Here’s how we can help:
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Education Consultants: Every family can access up to 3 hours of free consultation each year. Our consultants can assist with early childhood planning, accommodations and modifications, IEP drafting and goal setting, school transitions, future planning, and more. Support can include consultations, teacher training, student observations, IEP reviews or meeting attendance, or a mix of these services.
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Family Support Groups: Join one of our monthly Zoom groups to share ideas, seek advice, and connect with others who understand your journey. Several groups focus specifically on educational topics.
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Podcast: This week’s Starry-Eyed Podcast features WSA Educational Consultant Dr. Robin Pegg, sharing timely back-to-school advice with a focus on setting goals and working effectively with your team. Don’t miss it!
Looking ahead, we’re excited to announce the upcoming launch of WSA KNOWS: the WSA’s Knowledge Network of Williams Syndrome. This expert team will support families in critical areas such as education, IEPs and transitions, therapy, behavioral consultation, individual and couples counseling, and adult services. Stay tuned for more details in the coming months!
And finally, we love seeing your back-to-school photos! Whether your child is 3 and starting preschool or 23 and entering a post-secondary program, share those moments with us! Tag us on social media with #williamssyndromeassociation, comment on our Facebook post, or email them to social@williams-syndrome.org.
Wishing everyone a successful and supported school year!
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Sarah Schaefer
Executive Director
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Looking Back to Move Forward
By Director of Family Support, Joel Liestman
For the last month and a half, I’ve spent a great deal of time in a place somewhere between nostalgia and tech troubleshooting. The nostalgia comes from creating the WSA’s new “In Loving Memory” page — a place where we can remember and celebrate those with Williams syndrome who are no longer with us. The tech troubleshooting…well, that’s just part of building anything on the internet in 2025.
This page is something we’ve wanted for a long time — a space where people can share photos, memories, and stories that keep our loved ones’ spirits alive. It’s been humbling to see the faces, read the obituaries, and feel the ripple effects each of these lives has had on their families, friends, and on our entire WSA community. I also know this is only the starting point, and many more families will reach out with individuals and information I was unable to locate from the years BI (Before Internet).
And here’s the thing about memory: it’s not just about looking back. It’s about carrying something forward. When we take the time to remember, we’re not just honoring the past; we’re giving ourselves the fuel to keep going with purpose and intentionality. We remember the laughter at camp talent nights, the many, MANY hugs at conventions and awareness walks, and the way a person with WS lights up a room (Zoom or real) just by being there. Those moments become compass points — not just for moving forward as a community, but for building momentum and growing.
Because let’s be honest, life with Williams syndrome isn’t all sunshine and 17 camp versions of “Defying Gravity.” It’s appointments and advocacy, triumphs and setbacks, unexpected joy and equally unexpected challenges. It’s why the WSA was started by families who knew that seeking knowledge together was better than going it alone. What we’ve learned from each other over the years is worth more than any manual—because it’s written in lived moments, shared laughter, and the kind of understanding that only comes from walking the same path. When we remember where we’ve been, and the people who have walked (and danced, and marched in parades, and maybe played the saxophone) alongside us, we’re reminded why we fight for better supports, better understanding, and better futures. It’s why we create programs, virtual groups, and events to share knowledge, share togetherness, and share space until we can all be together again.
The “In Loving Memory” page is a love letter to our community — past, present, and future. It’s a reminder that we view our WS community as more than statistics or medical terms; we see a tapestry of stories woven together by resilience, joy, and love. And as we continue forward, we carry those stories with us, letting them shape not only how we remember, but how we live.
So yes, please visit the page. Share your memories. Post your favorite photos. And then, as you close your browser tab and step back into the busyness of your day, carry with you a little piece of someone’s light. Because in the end, that’s how we honor them best: by letting their spirit guide the way.
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WSA Educational Consultant Robin Pegg returns to the WSA's Starry-Eyed Podcast for her third year with some fantastic back-to-school advice for parents and caregivers. This episode deals specifically with setting goals and working with your team to create effective IEPs. It's not to be missed.
View the episode on the WSA's page on YouTube, or by visiting the WSA website below!
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WSA Adventure Seekers
Are you an adult with Williams syndrome, age 18 or older, or their parent or caregiver, and want to ensure you never miss out on information about our Adventure Seekers program?
Be sure to join our Adventure Seekers email list! This is how you'll learn about our monthly virtual meet-ups, trips, learning opportunities, in-person gatherings, and more!
Join us September 16 at 4pm ET or September 18 at 7pm ET
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FAMILY SUPPORT GROUPS & MONTHLY EVENTS
September 2025
Tuesday, September 2
Wednesday, September 3
Thursday, September 4
Saturday, September 6
Thursday, September 11
Saturday, September 13
Sunday, September 14
Sunday, September 14
Monday, September 15
Tuesday, September 16
Wednesday, September 17
Thursday, September 18
Sunday, September 21
Monday, September 22
Thursday, September 25
Saturday, September 27
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Walk hosts wanted!
Let’s wrap up the 2025 Walk Season in style! Whether it’s a spooky Trick-or-Treat Walk, a festive Turkey Trot, or a cozy Carols & Cocoa Walk, you can help us end the year with a bang. Learn how you can host a walk in your community!
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ACE-WS is hosting the next virtual PACES (Parent and Caregiver Educational Series) event, which will be taking place on Wednesday, August 27 at 8pm.
You are invited to Dr. Robin Peggs's presentation on "Educating the Student with Williams Syndrome." This presentation will provide a broad overview of the Williams syndrome learning profile and a variety of "use it tomorrow" instructional strategies to support learning for students with WS.
| | The WSA is excited to provide our members with the opportunity to participate in important research studies. Please check out the research opportunities below. | |
Research opportunities
Opportunity 1: Does your child get overly upset in any of these situations:
Brushing hair, using hand dryers, flushing toilets, or hearing loud noises? Are there other specific, predictable triggers? If so, we are looking for your help in developing a new play-based approach to reducing these strong emotional reactions: Development of Behavioral Play Therapy for Anxiety for Children with Williams syndrome
Opportunity 2: Massachusetts General Hospital and the Lurie Center for Autism are currently recruiting for a research study on Aging in Williams Syndrome: Aging in Williams Syndrome
Opportunity 3: CReWS (the Collaborative Registry for Williams Syndrome) has been developed for, and is owned by, the Williams Syndrome Association. The Registry collects data about the lives of people diagnosed with Williams syndrome (WS) in order to advance our understanding of the condition and its underlying causes and to develop better treatment options for persons with Williams syndrome: CREWS registry for Williams Syndrome
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Shop WSA Merch on Outshine
Looking for a special gift that gives back? Check out our custom collection with Outshine Labels, the online marketplace for disability advocates, where you can get boutique apparel and gifts for anyone on your list, and 70% of profits benefit the WSA.
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