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From the WSA VP, Sarah

The Buddhist monk Thich Nhat Hanh once said, “Awareness is like the sun: when it shines on things, they are transformed.” The poets NSYNC once said, “It’s gonna be May!” We are on the cusp of one of our biggest Williams Syndrome Awareness Months ever!

Our community has been educating people about Williams syndrome for decades - what it is, the challenges that come with it, the gifts people with WS share with others, and the rarity and diversity of our population. This month we embrace our Awareness Era with several options like the WS Awareness Month Toolkit for sharing photos on social media!

It is also important to recognize not just Williams syndrome, but the Williams Syndrome Association and the work we do to support families nationwide. From the Family Support Network to in-person events to funding medical and behavioral research, the WSA strives to leave no stone unturned for families and individuals with WS. However, awareness only gets us some of the way there.

This May, we want to encourage people to turn awareness into action by promoting our amazing community members, educating the public about WS, and highlighting the myriad of programs the WSA offers, all leading up to our first weekend for Williams. On May 31 and June 1, a massive 24-hour fundraising event will empower people to turn the excitement of celebrating awareness month into a contribution to help fund and grow the WSA’s programs for years to come! WeekendforWilliams.com will launch on May 1 to show how easy it is to start your own fundraiser, get a company financial match, and text donations directly to the WSA. 

So get ready to share your connection and passion for the WSA all month long and lead the charge to help the WSA meet its fundraising goal at Weekend for Williams! We’ll share more details on this exciting new fundraising event as we get into May.

And the fun doesn’t stop there! Approximately 75 days from now, we descend on Phoenix for a fun-filled week. If you haven’t had a chance to check out our 2024 WSA Convention Registration webpage, be sure to check it and take advantage of our early bird pricing (ending on May 7). We have several ways that you and your family can be involved. From attending sessions to volunteering - there’s something for everyone. Be sure to read all about some of the smokin’ activities planned for our community. Throughout May, watch your email for more convention sneak peeks, including information about our impactful keynote speaker, a crazy-interesting guest with a fun WSA-branded product I think you’ll love, and how you can have a chance to get your hair styled before the dance, complements of our Premier Sponsor, Innersense Organic Beauty!

We can’t wait to see everyone in Phoenix!

Monthly Virtual Adventure Seekers Meeting Zooms

It's time to register for our May 2024 Zooms!

You can join us for the Tuesday Shenanigans, May 21 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo, May 23 at 7pm ET/ 6pm CT/ 5pm MT/ 4pm PT.

All groups meet 8-9 PM ET. Click on the image to register. You must register to attend.

Upcoming Events - Highlights

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.

Thank You, Event Coordinators!

2024 Event Coordinators (mid-March until mid-April)

Be sure to look for upcoming and local gatherings on our website on the events page!

2024 WSA National Convention Updates

Only a few months remain before we rise together at our 2024 WSA National Convention. We are excited for a week of exploration, expansion, networking, and FUN! 

As Sarah mentioned, our 2024 WSA Convention Registration is LIVE! This year, registration occurs in two phases:

• PHASE 1 - NOW OPEN: Registration for convention, programs, and optional convention add-ons is available for all attendees. Sign up and let us know who will be joining you.
• PHASE 2 - OPENS EARLY JUNE 2024: Register for sessions and download the Convention App. Once downloaded, you can explore exhibitor information, connect with other attendees, and more.

The final list of Parent/Caregiver/Professional Sessions & Roundtable Topics and the detailed agenda for the teens and adults with WS and their siblings will be published on the Convention page on the WSA website in May. 

As a reminder, early bird registration pricing has been extended an extra week until May 7. Please take note of other important dates related to this year’s convention:

Our WS conventions always bring a LOT of fun for everyone. Read below for a sneak preview of some of our planned activities throughout the week.

WSA’s Got Talent Karaoke

We know our community is filled with exceptional talent! Each evening we are hosting our version of WSA’s Got Talent Karaoke to showcase all of YOU! Bust out your best rendition of Taylor Swift (or whatever song you choose), perform your best magic trick - whatever you decide to do - BRING IT! 

Glow Bingo!

B-4 you arrive in Phoenix (see what we did there??), pack your daubers and glow-in-the-dark/neon gear! Join us on Friday, July 12, for an evening of numbers, music, and FUN! The evening will be called by none other than our very own Adventure Seekers host … JOEL LIESTMAN (and his many wigs)! Register for our free BINGO night, and add a dauber to your convention registration on the Convention Add-Ons page for $2. If you’re not a fan - You will B-1! BINGO registration may be available onsite at convention, depending on availability.

Arizona Diamondbacks vs. Atlanta Braves Game

Hit a home run with your family and secure your tickets for Thursday night’s (July 11) baseball game at Chase Field against the Atlanta Braves. The Arizona Diamondbacks graciously donated 1,200 tickets to our event. Each family can reserve up to 6 tickets through convention registration. Tickets are first come, first served, so reserve yours TODAY! 



NOTE: Ticket does not include transportation, parking, or food. Additional tickets may be available onsite at the convention. 

Saturday Night Closing Dance -The Mane Event

Get ready for a hair-raising good time! Join the party with your best wig, crazy hat, funky or fabulous hairstyle. Let’s get ready to ROCK N’ ROLL! Make some memories and have a hil-hairious night! Get your tickets during registration on the Convention Add-Ons page. Tickets are $10 per person.

Want to learn more about our convention? Visit the links below to gain important information and prepare for a fantastic week. We can’t wait to see you all there!

The Starry-Eyed Podcast

The WSA's podcast, The Starry-Eyed Effect, delivers new episodes every other Tuesday, and a new episode dropped last week!

This week, in Episode 33: Turning Back the Years with Jen Sellars and Mike Hladish.

In this episode, Jen and Brendan are joined by Jen and Mike...wait, that sounds confusing.

Our hosts are joined by Jen Sellars (teacher and mom to a daughter with WS) and her friend Mike Hladish. They share their amazing story of growing up and reconnecting in a different part of the country that should warm your heart! We would like to acknowledge the wonderful organization Just People where Mike lives. The 60 Minutes story referenced in the interview can be seen on the WSA Media and Entertainment page.

Producer Joel would like to thank TOTO, Steve Lukather, Joseph Williams, and the rest of the band and crew for an amazing show and generous kindness toward Bennett (their number one fan!)

Follow us on our Facebook page. Rate and subscribe to our channels on YouTube and Apple Podcasts - or wherever you get your podcast delights!

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

As the WSA raises awareness, we’re excited to provide members with WS and their parents/caregivers the opportunity to participate in research studies that could benefit the current and future Williams syndrome community. Please check out the three research opportunities below.

Research Opportunity #1:

Project WellCAST

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!

What does participation look like? Eligible participants receive FREE mental health therapy, self-guided resources, and/or live peer coaching from other caregivers of neurogenetic conditions. 

Caregivers of younger children may also receive behavioral coaching focused on challenging behaviors, sleep, and communication. Black caregivers are also eligible for supplemental supports focused on racial trauma and experiences. 

What data will we collect?

In addition to the support program, you will provide data about your experiences and feelings before, during, and after your support program by completing standard forms real-time snapshot surveys sent to your smartphone. You will be compensated up to $100 for completing these forms. Data collection for this project spans about 6.5 months, including the 12 weeks you are receiving your support program.

Interested?

Complete the WellCAST screening form to see if you’re eligible.

If you have questions, reach out to: wellcast@purdue.edu

Please Note

Because this is a research study, qualifying participants do not select which type of support they will receive. Participants may stop the study at any time without penalty. This is a research study funded by the National Institutes of Health and approved by the Purdue University Institutional Review Board 2022-1580 (PI Dr. Bridgette Kelleher)

Research Opportunity #2:

Aging in Williams Syndrome

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. The study includes screening, optional training, and scanning visits at the MGH Lurie Center and MGH Martinos Center for Biomedical Imaging. Screening visits may be done virtually. Eligible participants will be compensated up to $150 for their time. See the flyer for more details.

Research Opportunity #3:

Anxiety and Phobias in Children with Williams Syndrome

The Williams Syndrome Association (WSA) 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. The partnership will support the work of Brianna Young, a graduate student in Clinical Psychology, who is conducting research on play and humor-infused exposure therapy to help children with anxiety and specific phobias.

Does your 4 to 8-year-old with Williams syndrome get very upset in these or other predictable situations?

• Flushing of toilets
• Hand dryers
• Blenders
• Vacuum cleaners
• Brushing hair

If so, they may be eligible to participate in a research study at UWM. For more information and instructions on how to volunteer, please click the button below:

Shop WSA Awareness Merch

This merchandise was created to get people talking and learning more about Williams syndrome. Show your support for Williams syndrome Awareness Month with Official 2024 WSA Awareness Merch!



Shop WSA offers a range of products promoting Williams Syndrome Awareness from yard signs to t-shirts.

Wear your support proudly!

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.

Thank you for your support!