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From the WSA ED, Dr. Mary

As we step into the new year, my heart is brimming with optimism and excitement for the opportunities ahead. The momentum we've built as an association is a testament to the dedication and passion each member brings to the table. Your involvement, whether at events, through volunteering, or simply as a supportive presence, weaves the vibrant tapestry of our community.

This year promises to be a whirlwind of programming, support, and education – plus, of course, the 2024 WSA National Convention. Get ready for a year packed with unforgettable experiences.

To ensure you're in the loop, keep an eye on our website for the latest convention updates – schedules, speakers, and all the cool extras that will make this year's gathering unforgettable. Your active engagement is the secret sauce for a convention that hits all the right notes.

Speaking of hitting the right notes, our membership has been on fire this past year! The surge in numbers reflects the growing strength and influence of our community. It's heartening to see more kindred spirits joining us on this incredible adventure. Your dedication to our cause is nothing short of inspiring and underscores the vital work we do at the WSA.

Now, let's talk dollars and sense! A massive shoutout to all of you who generously donated to the WSA. We're proudly a donor-driven organization, and each dollar plays a crucial role in our ability to support individuals with Williams syndrome and their families. Your generosity fuels our mission, and we're deeply grateful for your unwavering support.

In closing, let's dive into the upcoming convention with excitement and anticipation. It's a chance for us to connect, learn, and grow together. As we navigate the new year, let the shared momentum propel us toward even greater triumphs. Thank you for being a vital part of the Williams Syndrome Association and for making a significant impact on the lives we touch.

Wishing you all a year filled with joy, connection, and memorable experiences.

Monthly Virtual Adventure Seekers Meeting Zooms

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

You can join us for the Tuesday Shenanigans, February 20 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo, February 22 at 7pm ET/ 6pm CT/ 5pm MT/ 4pm PT.

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

Board Member Spotlight

Bill Palmer

Bill Palmer is a semi-retired structural engineer and has worked for several nonprofit organizations in the construction industry. He was executive director of two nonprofits and then spent 25 years as editorial director of a group of magazines and websites. Bill has also served on several volunteer boards, including the Williams Syndrome Association board of trustees, where he was president in the late 1990s. Bill and his wife, Wynne, live in Colorado with their 33-year-old daughter Autumn, who has WS.

What initially inspired you to join the WSA’s Board of Trustees, and how does the mission resonate with you personally?

The WSA has always been an important source of information and contacts to support our daughter ever since she was diagnosed when she was one year old. We feel grateful to the WSA, so when it was transitioning to a new executive director in 2022, and I was asked to rejoin the board to help with the transition, I humbly accepted, with the hope that I could contribute to a successful and smooth transition.

How long have you been a member of the WSA?

My daughter, Autumn, was diagnosed just before her first birthday in October 1991. The geneticist who made the diagnosis told us about the WSA. It just so happened that less than a week later, there was a regional conference in Detroit, where we then lived. Going to that conference was both a shock and a source of great hope. We met everyone from small children to adults and looking into their faces, we knew that, indeed, we had a kid with Williams syndrome and that we weren’t on this journey alone.

What is one piece of advice or tip would you give to a new member about the WSA?

The advice I always give to people about being a member of an organization like the WSA is to get involved—don’t just watch from the sidelines. You get 10 times more value when you participate. Just watching is boring—take a chance, get involved, and even though it can be hard work, you’ll be glad you did.

Can you share a memorable moment or achievement during your time on the board that you feel particularly proud of?

I was proud and humbled to be asked to be board president in 2024. Following in the footsteps of Cyndra Cole and all the other folks who have taken the time out of their lives to lead the WSA, is a little intimidating, but I am confident that we can make progress this year on our goals of expanding the resources available to members and having a successful convention in July in Phoenix. Moving into 2025, an important goal for me and the WSA is to expand our volunteer network so we reach even more people in need.

In your opinion, what sets the WSA apart in terms of making a positive difference in the community?

In my short time on the board, I have seen WSA make great strides in improving our diversity, both on the board and in the services we provide. We know that Williams syndrome is completely unbiased—it affects people of all races and economic statuses equally, so we need to get our message out equally. Our DEI (diversity, equity, and inclusion) Committee, led by Jenty Okeyo and Amy Nussbaum, is making sure that we keep this top of mind in everything we do. That effort is greatly expanding WSA’s reach. We are building our community to include every person with Williams syndrome.

We need you!

It’s Walk for Williams time again! We are looking for dedicated leaders to help make a positive impact and advance our mission. Three of our incredible Walk Chairs highlight their experiences.

Upcoming Events - Highlights

Check out the highlighted events below. You can find more events and local gatherings on our website's events page!

Thank You, Event Coordinators!

2023/2024 Event Coordinators (mid-December until mid-January)

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

2024 WSA National Convention: We Need Your Help!

The WSA National Convention is the LARGEST Williams syndrome event in the country, bringing together the foremost experts on Williams syndrome and related characteristics to discuss the latest research findings, medical treatments, and educational strategies.

More than 60 educational sessions provide families with the latest resources and information, while children and adults with Williams syndrome are offered specialized age-appropriate programs. This 5-day key event (held bi-annually) costs more than $650,000 to put on and utilizes an army of 150+ volunteers daily! Our goal for 2024 is to raise a minimum of $250,000 in Sponsorships to offset expenses so we can ensure the convention is as financially accessible as possible for the 1,000+ attendees. 

Sponsorship of the 2024 Williams Syndrome Association's National Convention will not only support this important event but also contribute to the well-being and education of individuals with Williams syndrome and their families.

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!

Did You know?

There is a spot right on the homepage in the footer where you can find an event near you! Check it out! No events near you? Why not coordinate one?!

WSA Podcast: The Starry-Eyed Effect

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

This week, in Episode 27: The Tale of Alex and Alexandra, Hark! Come gather ye round to hear the tale of Alex and Alexandra, who live lives touched by Williams syndrome!

The show is joined today by Alexandra Reneer, an adult with WS living in Utah. She shares with us how being a dancer has allowed her to stay physically healthy and gives her the confidence to teach dance to others with developmental disabilities!

Then we're joined by Alex Chiarappa. She is the mother to 5-year-old Collins and almost 2-year-old Jax, who has WS. She shares their journey through these first couple of years and how she uses Yoga to center herself and find mindfulness through stress. Her 2nd annual Stretch into Rest Fundraiser is coming up soon.

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 Williams Syndrome Awareness

We are thrilled with our apparel and accessories partnership with Outshine Labels. Outshine Labels, its founder and staff, are part of the Williams syndrome family.

Purchase your WSA merch by clicking the button below.

70% of all profits generated from the sales will come back to the WSA, benefitting our efforts to continue supporting individuals with Williams syndrome.

Supporting those with Williams syndrome is, and continues to be our foremost priority. We couldn’t have thought of a better organization or platform to partner with than one already amplifying awareness and advocacy in the disability community. For us, that is an absolute win-win.