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From the WSA Interim ED,

Sarah Giddings


Dear WSA Community,


Fall is my absolute favorite time of year - and this year is definitely no exception! I had the privilege of ringing in the official start of fall in Boston at the first ever Boston Williams Syndrome Weekend! I connected with a number of families who had never met anyone else with WS prior to this weekend, and was taken back to the day I experienced that same roller coaster of emotions. I’m grateful this opportunity was provided for those families - and for so many others.


We spent a blustery, rainy Saturday afternoon at Mass General with parents and caregivers of kids with WS for educational sessions, socializing, meeting adults with Williams syndrome, and learning from each other. I continue to be overwhelmed by the talent and care of the doctors, therapists, and professionals who dedicate their time to our Williams syndrome community. Special thanks to Dr. Barbara Pober, Dr. Robyn Thom and Cheri LePage from the Mass General Williams Syndrome Program for coordinating this event, and to the Anthony G. Filippazzo Fund for Williams Syndrome Research & Advancement for making the event possible. I was also reminded of the importance of striving to make conferences like these available to more families throughout the country - so know that this is on our list for the future!


On Sunday, the rain cleared and over 450 people gathered at the Franklin Park Zoo for the Boston Fundraising Walk for Williams Syndrome! Watching individuals with WS dance together, friendships being rekindled, and families connecting with others to know they are not on this journey alone was a humbling reminder of what our purpose is here at the WSA. Next month, the fall fun continues and I can’t wait to connect with more of you at the Pittsburgh Trick-or-Treat Walk!


Until next month, enjoy some cooler weather, stay safe if you’re in hurricane territory like I am, and please reach out to us at the WSA to share your successes, ask your questions, or for anything else you may need.

Executive Director Search Update



As you may know, following the departure of the WSA’s Executive Director in July 2024, the Board of Trustees appointed Sarah Giddings, WSA’s Vice President of Programs and Services, as interim ED and created a search committee to look for a permanent replacement. 


To ensure we find the best leader for our organization, the search committee is reaching out to our members and dedicated volunteers. Their insights and recommendations are invaluable to us, as are those of every member. We want our community to have a voice in this process! 


You can see the position description here.



You will see that the first essential qualification is: Demonstrated passion for, and commitment to, empowering individuals with disabilities and their families, with a preference for professional or lived experience with WS, rare diseases, or developmental disabilities.


This is a key qualification, along with other important factors such as organizational leadership, community building, financial acumen, and fundraising capabilities.


If you know someone who not only has the necessary skills and experience but also possesses the dedication and empathy required to lead the Williams Syndrome Association, we would appreciate you letting us know. We plan to complete this initial outreach by October 7. 


All communications regarding the Executive Director search should be sent to:

WSAexecutivedirector2024@gmail.com


The WSA improves the lives of those with Williams syndrome and with the right leadership we can do so much more.


-Bill Palmer, President WSA Board of Trustees 2024

-Ellen Hoch, Chair 2024 ED Search Committee



Click to view on webpage



Global Connection: Williams Syndrome Worldwide


The feel good story of the month! Thanks to NiveaMen, Liverpool FC, and Curtis Jones for giving Harry some core memories to last a lifetime!


Watch the full video here!

Monthly Virtual Adventure Seekers Meeting Zooms

You can join us for the Tuesday Shenanigans October 22 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or

Thursday Hullabaloo October 24 at 7pm ET/ 6pm CT/ 5pm MT/ 4pm PT.

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! Click here to sign up.

Register for the Adventure Seekers Zoom

Adventure Seekers Cruise NEWS 2025


If you're registered for the cruise, don't forget to join the cruisers Facebook group! If you are not yet registered, you have until October 27, 2024! DON'T MISS OUT!

Click here for cruise news

FAMILY SUPPORT NETWORK


Check out our Family Support page on our website for more info & group dates here.


Join the Family Support Forum on the WSA's website to connect with group members between meetings and ask any other questions related to Williams syndrome. Groups are created based on the needs of our WS community.


If you have any questions or have specific topics you'd like to suggest, email familysupport@williams-syndrome.org.

OCTOBER SUPPORT GROUPS

All groups meet 8-9 PM ET. You must register to attend.

Dates are subject to change

Click for details & to register

TAKE ACTION

What's happening in a community near you!


Check out the highlighted events below. More events and local gatherings are on our website's Events page! Don't see an event near you? Plan one! We can help.

Check out all our upcoming events here!

Thank You to our September Event Coordinators!

Sherry Andrews, Holland, OH

Megan Bischel & Amanda Pahl, Twin Cities, MN

Shonna Taylor & Nicole Fuehne, Belleville, IL

Stefanie Mueller, Orchard Park, NY

Deliah Otte, Fond Du Lac, WI

Paola Martinez, Miami, FL

Steph Turmel, Courtney Song, & Kayla Lewis, Boston, MA

Bill Palmer, Jen Keeton, & Lisa Matlock, Denver, CO

The Starry-Eyed Podcast

The WSA's podcast, The Starry-Eyed Effect, delivers new episodes every other Tuesday, and we hit 10,000 views on YouTube this month!


Check out the Starry-Eyed updates and get all the information right here on the podcast page!


The video version of the podcast is available on the WSA channel on YouTube.


Interested in being a guest or have a question for the hosts? Email us at podcast@williams-syndrome.org

2024 CONVENTION SESSION VIDEOS AVAILABLE!


We are excited for the continued interest in our 2024 WSA National Convention recordings - all 66 sessions and keynotes! We are also thrilled to announce that these recordings are video footage so you can watch each session as it took place!


You can purchase all these video sessions by clicking on the link below. Upon completion of your purchase, someone from the WSA will contact you with your individual access link.


Click here to purchase session videos


One of our WSA families is considering donating the purchase of these recordings for African American families, but would like to know how much interest there is. If you’re an African American family who does not have the resources to purchase the recordings, please complete this interest form no later than September 30, 2024. Someone from the WSA will reach out to you in a few weeks!


Please click here to fill out the interest form for this opportunity!



If you have any questions please don't hesitate to contact us at convention@williams-syndrome.org

Are you a caregiver of a child with Williams Syndrome? Project WellCAST is now enrolling for our next wave!



Project WellCAST is a NIH-funded clinical trial focused on CAREGIVER and FAMILY well-being. If you are eligible for our research study, you’ll receive a FREE 12-week support program that can be completed 100% by telehealth! Click here for more info.


The Massachusetts General Hospital is conducting a research study investigating brain aging in adults with Williams syndrome using MRI scans. Patients must be age 18 or older and have a diagnosis of Williams syndrome. Eligible participants will be compensated up to $150 for their time. Email Dr. Thom's team here.

The Williams Syndrome Association is pleased to announce a new research partnership with the University of Wisconsin Milwaukee (UWM) Child Neurodevelopment Research Lab, led by Bonnie Klein-Tasman, PhD. Click here for more details on this opportunity.

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Shop WS Boutique


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.

Shop the WS Boutique on Outshine Labels

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