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From the WSA ED, Dr. Mary

Dear WSA Community,

I am thrilled to share the exciting news that my family welcomed a baby girl, Elizabeth Adele, on Tuesday, March 19. She arrived a few weeks early but is healthy, and we’re crazy about her!

As I embark on this journey, I assure you that the Williams Syndrome Association is well-prepared for my temporary absence. Fortunately, we have a capable and dedicated team in place to ensure the seamless continuation of our operations. I am delighted to announce that Sarah Giddings, our Vice President and a longstanding member of our organization, has stepped in to lead us during my maternity leave. Sarah brings extensive experience as a parent, volunteer, past board member, and WSA employee, making her well-equipped for this role.

Rest assured, a comprehensive plan was developed to address the transition, and all necessary measures have been implemented to guarantee the smooth running of our programs and services. We have full confidence in Sarah's ability to steer the ship in my absence, and we appreciate her willingness to take on this responsibility.

I eagerly look forward to returning in late June and hitting the ground running. Additionally, I can't wait to reconnect with everyone at convention in Phoenix in July. We have exciting events during my absence, including Walk for Williams, Awareness Month, and Weekend for Williams. You can find more details about these events in the newsletter, on social media, and on our website.

Thank you for your ongoing support. I'm excited that Sarah will keep you updated in the coming months.

Warmest Regards,

Monthly Virtual Adventure Seekers Meeting Zooms

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

You can join us for the Tuesday Shenanigans, April 16 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo, April 18 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.

Lead the Way for Williams Syndrome Advocacy!

Are you ready to make a lasting impact? We are looking for passionate and dedicated individuals to step into the prestigious role of Walk Chair for our Walk for Williams program. This most crucial leadership position drives change and supports the Williams syndrome community. By becoming a Walk Chair, you will be joining a community of like-minded individuals who share your passion and have access to exclusive perks and swag!

Upcoming Events - Highlights

Check out the highlighted events below. More events and local gatherings are on our website's events page!

Thank You, Event Coordinators!

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

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

2024 WSA National Convention

Welcome to your March Convention Update!

It’s almost time! Our 2024 WSA National Convention Registration opens soon. We appreciate your patience as we pivot to accommodate Mary going on leave a few weeks early. In the next couple of weeks, look for our announcement with the essential information you need to sign up for the convention. Engage with our monthly newsletter, social media posts, and WSA Convention Website for more details and a sneak peek of what’s to come.

WEEK AT A GLANCE

• Tuesday, July 9:
• Registrant and program check-in begins midday 
• First Time Attendee Welcome Session 3 - 4:30pm 
• Opening Night Event 6 - 9 pm
• Wednesday, July 10: 
• Sessions for parents/caregivers & professionals: 8:30 - 11:30am and 1:00 - 4:00pm 
• Programs for kids and adults with WS and their siblings up to age 17: 8 - 4:30pm 
• Exhibitor Night: 6 - 9 pm
• Thursday, July 11:
• Sessions for parents/caregivers & professionals: 8:30 - 11:30am and 1:00 - 4:00pm 
• Programs for kids and adults with WS and their siblings up to age 17: 8 - 4:30pm 
• Watch for information on optional evening activities.
• Friday, July 12:
• Sessions for parents/caregivers & professionals: 8:30 - 11:30am and 1:00 - 4:00pm 
• Programs for kids and adults with WS and their siblings up to age 17: 8 - 4:30pm 
• Watch for information on optional evening activities.
• Saturday, July 13:
• Sessions for parents/caregivers 8:30 - 11:30am and 1:00 - 4:00pm 
• Programs for kids and adults with WS and their siblings up to age 17, 8 - 4:30pm
• Our Closing Dance Party will be from 7 - 10 pm!

2024 CONVENTION PRICING

PARENT/CAREGIVER OR PROFESSIONAL ATTENDING SESSIONS

Full week registration:

• Early Bird Registration: $475
• General Registration: $500
• Late Registration: $525

Full-week registration for additional parent/caregiver or professional attending sessions:

• Early Bird Registration: $225
• General Registration: $250
• Late Registration: $275

One-day registration:

• Parent/Caregiver or Professional attending sessions: $225
• Additional Parent/Caregiver attending sessions: $100

Two-day registration:

• Parent/Caregiver or Professional attending sessions: $450
• Additional Parent/Caregiver attending sessions: $200

PROGRAMS FOR INDIVIDUALS WITH WS (AND SIBLINGS UNDER 18)

• Infants/Toddlers (up to age 5): $225 weekly, or $85 per day
• School-age (6 - 12): $250 weekly (daily rate not available)
• Teens (13 - 17): $275 weekly or $105 per day
• Adults with WS: $275 weekly or $105 per day

CHAPERONES/RELATIVES NOT ATTENDING SESSIONS: $125.Includes daily continental breakfast, snack breaks, exhibits, and free activities.

1:1 CAREGIVER FOR ADULT PROGRAMS: $275. Covers cost of programming, admission to venues, transportation, and any included meals.

VIRTUAL ATTENDANCE: $250 - Receive access to recordings of 2024 WSA National Convention educational sessions after convention.

IMPORTANT DATES

Registration will open in late March/early April. Watch our website and your email for updates.

Scholarships

For every convention, the WSA offers need-based scholarships to families to help offset the costs. Priorities for general scholarships are given to first-time attendees (but the applications are open to all). We also have a specially endowed fund for culturally diverse families. Scholarship applications will open with convention registration. Visit our WSA Convention Website to learn more about our convention and complete our 2024 Convention Scholarship Interest Form. 

Hotels

We have options! Check out our website to learn more about the 2024 Convention Hotels. We now have a total of four hotels to explore for your visit to Phoenix:

• Hyatt Regency Phoenix - Host for convention
• Hyatt Place Phoenix/Downtown
• Hilton Garden Inn
• Renaissance Phoenix Downtown Hotel

Reminder - Due to a higher-than-anticipated interest in the convention, most of our room block at the Hyatt Regency Phoenix is currently sold out. The entire hotel is nearly sold out on Friday, July 12, so we cannot add more rooms to our block. As we get closer to convention, and once registration is live, we anticipate some room block shifting/cancellations will open up room availability. Be sure to check your hotel of interest to secure your spot. You can also join the waitlist for the Hyatt. 

How can you get involved? Read below and let us know if you or someone you know wants to get involved.

Volunteer 

Do you have family or friends in the Phoenix area who are passionate about volunteering? As the heart (and the hands) of the convention, we are looking for approximately 150 energetic and excited individuals each day to join us for our 2024 WSA National Convention. These individuals will be vital to ensuring safety and efficiency in the following areas:

• Infant & Toddler Childcare Programs
• School-Age Program
• Teen and Adult Companions
• General

Visit our 2024 WSA National Convention Volunteer page for information on schedules, volunteer requirements, or to register to volunteer.

Exhibit

If you or someone you know is interested in being an exhibitor for this year's convention, and/or you are an individual with WS who owns a business, please complete our 2024 WSA National Convention Exhibitor Interest Form.

There are many great resources and providers we may not know about. If you know someone or a business that can bring value to our WS community, please email us at convention@williams-syndrome.org.

We are VERY excited to see everyone in Phoenix. Follow our monthly newsletter, social media posts, and WSA Convention Website for the latest news!

Because “people give to people,” we’re reaching out to our members in the Southwest to ask for your assistance. Do you know of a corporation, small business, community organization, or philanthropic individual who might be interested in making a meaningful impact by becoming a Convention Sponsor/Underwriter? Opportunities are available, ranging from $1,500 to $20,000.

The WSA staff and a small-but-mighty committee of volunteers are ready, willing, and able to make the asks – we just need your help in identifying the right contacts!

Please contact Director of Development Ann Marie Sanders at givewsa@williams-syndrome.org or 248.509.0697 to share contact information of any potential Sponsors.

We sincerely thank you for your assistance and look forward to seeing you in Phoenix!

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 31: Leadership and Whispering Trails with Joshua Dean and Emma Thomas.

Producer Joel joins Brendan as they interview Joshua Dean, an adventurous camper, hard worker, and fantastic leader fresh off his latest week in Georgia at Camp Blue Skies. Then, Jen and Brendan talk to Emma Thomas, Camp Director of Whispering Trails Therapy Camp and Teen Camp. Registration for the 2024 camp in July opens soon, and Emma tells us why the camp experience can be incredibly beneficial to our kiddos!

Check out Camp Whispering Trails information at www.williams-syndrome.org/camps or email summercamp@williams-syndrome.org.

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!