A Message from Executive Director, Sarah Schaefer
Happy September, everyone!
As the seasons begin to shift, I always find myself pausing to take a few deep breaths. School is back in session, the days are getting shorter, and before long the holiday season will be upon us with all its joy and busyness. September often feels like a time to reset and recharge—but this year has been anything but calm here at the WSA! There is so much happening across our community, and I’m excited to share a few highlights with you.
Convention is always a hot topic and, in this issue, we’re excited to share more details about our 2026 convention in Buffalo, Niagara, NY. Be sure to mark your calendars! Within the next few days, we’ll also announce the location for our 2028 convention, and earlier this month, I spent time out west exploring possibilities for 2030. We know how important it is for families to plan ahead, so by the end of this year you’ll know the dates and locations for the next three conventions.
Of course, even the best-laid plans are not without challenges. As we’ve shared before, Buffalo’s hotels are smaller than those we’ve used in previous host cities, so the Buffalo Convention Center will be our main hub. That means sessions, activities, most programs for individuals with WS, and even a dedicated hangout space for our adults with WS will all take place there. Many of you have asked about hotel accommodations. Due to construction delays at one of the larger properties, we’re finalizing some adjustments to ensure enough space for everyone in our room blocks. We’ll be sharing hotel details and reservation links very soon. Please check the convention article below for important dates and more information.
In mid-September, I had the privilege of joining the Massachusetts General Hospital Williams Syndrome Program for their day-long conference on Feeding, Eating, and GI Issues across the Lifespan. From there, I traveled to Philadelphia for the Walk for Williams. A heartfelt thank-you to everyone who planned and supported both events—they made a meaningful impact on families and our broader community.
And there are more opportunities ahead! On Saturday, October 18, I’ll be in Pittsburgh for the Trick-or-Treat for Williams. I can’t wait to see lots of smiling, costumed faces. Over the next 6-8 weeks, Walks will also be happening in Minnesota, Colorado, Michigan, Nevada, Georgia, and Texas. If you’re nearby, I encourage you to join in—it’s always uplifting to come together in celebration and support. Be sure to keep an eye on our Events calendar for gatherings in your area!
Early next week, our VP of Philanthropy & Communications, Jon Kent, and I will travel to Philadelphia to participate in the International Conference on Research in Williams Syndrome, hosted by the Armellino Center of Excellence for Williams Syndrome (ACE-WS). The program will include sessions on genetics, behavioral health, cognition and development, brain and behavior, cardiovascular disease, and more. We look forward to sharing updates from this important gathering in the months ahead.
And that is just a glimpse of the activity happening both within the WSA and across the Williams syndrome community. I encourage you to stay connected—read our weekly updates, follow us on social media, and, as always, reach out anytime.
Most importantly, I hope you find a little time this season to catch your breath, enjoy the small moments, and connect with the people who matter most. Our community is stronger because of each of you, and I’m so grateful we get to walk this journey together.
Take good care,
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Sarah Schaefer
Executive Director
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We know many of you are eager to begin planning for Convention 2026, and we are just as excited to share the details. While we’ve experienced a few hiccups with hotel construction, we are working hard behind the scenes to finalize everything you need to plan your trip.
Here’s a brief look at what’s in store:
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Wrightslaw Training – An optional pre-convention program focused on special education law and advocacy. It is designed for parents, advocates, attorneys, educators, health care providers, and others who represent the interests of children with disabilities and their families and is open to both members and non-members.
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Taste of Buffalo – The largest two-day food festival in the United States, right in the heart of downtown and steps from the convention center.
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Optional Excursion to Niagara Falls – Experience one of the natural wonders of the world with your WSA friends.
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Sessions for Everyone – Learn from parents, educators, medical professionals, and friends with Williams syndrome as they share knowledge, insights, and experiences.
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Age-Specific Programs – Engaging activities and support designed for all ages, from infants to adults, plus sibling programs for ages birth through 17.
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WSA Favorites Return – Don’t miss GLOW bingo, karaoke, and of course, our themed dance party on Saturday night.
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Save these key dates:
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November 5, 2025: – Hotel information released, room blocks open, and convention pricing posted.
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January 20, 2026: Scholarship information available and application opens.
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March 4, 2026: Registration opens for convention, sessions, and programs.
More details are on the way soon, but for now, mark your calendars, spread the word, and start getting excited for an unforgettable week together.
We can’t wait to welcome you to New York in Buffalo/Niagara, July 7 - 11, 2026!
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If you live close to Buffalo and would like to be involved in planning our 2026 convention, we need you! Your ideas and support for fundraising, sourcing volunteers, activities, entertainers, exhibitors (and more!) are what will make our convention a success!
Please complete the Committee Interest Form, and we’ll reach out to provide more info on joining our committee, along with the link to our October 20 Zoom. If you’ve already completed the interest form, you’re on our list!
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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 October 21 at 4pm ET or October 23 at 7pm ET
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FAMILY SUPPORT GROUPS & MONTHLY EVENTS
October 2025
Saturday, October 4
Tuesday, October 7
Wednesday, October 8
Thursday, October 9
Sunday, October 12
Monday, October 13
Tuesday, October 14
Wednesday, October 15
Thursday, October 16
Saturday, October 18
Tuesday, October 21
Thursday, October 23
Saturday, October 25
Monday, October 27
Thursday, October 30
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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!
| | 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
Opportunity 4: We invite you to take part in a research study led by Caroline G. Richter, Ph.D., at the University of Alabama at Birmingham (UAB). This study explores how children and young adults with Williams syndrome, ages 6 to 21, approach moderately challenging tasks and how their motivation relates to academic achievement, language, cognition, and behavior. Motivation in 6-21 year olds with Williams syndrome: Motivation in 6-21 "year olds" with 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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