Dear Friends,

Following a year like 2020, and thinking about all that happened, I am thrilled that the words that come to mind as I think specifically about the WSA are: grateful, humbled, appreciative, and so importantly: proud and excited. To have only positive thoughts for the future (following a year that seemed destined to provide only negatives) is amazing.

Throughout the year, I was reminded many times of the importance of the work we do. Families had so many questions – about the virus, virtual education, anxiety, depression, social isolation…and I was tremendously grateful that we have forged significant and critical partnerships with experts on Williams syndrome who could, and were happy to, help us create and share the resources that our members needed.

I have always taken great pride in our association, but never more than this year – from the ability of my staff to quickly adapt to working remotely, to the Board’s partnership, as we all worked to think creatively and re-imagine programming, finding ways to increase support and resources to help families and individuals with new challenges, while ensuring that our regular programming would continue. And it did – awareness month, the walks, camps, the national convention – each looked very different, but each program was held, and collectively they provided lessons to help us improve programming for 2021 and beyond. And that is exciting!

As we look to 2021, we are hopeful for in-person programming in the 2nd half of the year, and we plan to schedule walks and the camps within time frames that will give us the best possibility for this to happen. But we are prepared to switch to virtual as needed in 2021, and we are creating hybrid alternatives to extend our reach to families in every community for late 2021 and beyond.

The WSA mission remains solid and we are more prepared now than ever before to provide programming and resources, support research, and promote the partnerships and connections that will advance the interests of all individuals with Williams syndrome, in every community, throughout their lifespan.

Looking forward to a better and brighter year in 2021,

Terry Monkaba

We have received many inquiries regarding the safety of the COVID-19 vaccines for individuals with WS who are 16 and older. The WSA’s medical advisors recommend that those eligible should actively pursue getting the COVID vaccine unless they have had a serious allergic reaction to a vaccine in the past. In general, individuals with WS are not on a priority list; however, there is an extensive list of associated conditions that may move them up the list, such as known cardiovascular conditions, lung conditions or high blood pressure. For more information on medical conditions deemed priorities, click here.

Unfortunately, since every state is different in terms of their vaccination protocols, we can’t advise on specifics about eligibility and timelines (we wish we could!) The general advice is to make sure you’re registered via your health care provider’s online portal, and/or check your local health department website for alternative options, and sign up in as many places as possible. Once you secure a reservation, you can simply decline other invitations for a vaccination date that may be received.

Registration for WSA’s summer camp programs will open on February 1st, 2021. Programs are scheduled during their regular late July/early August time frame, and we are hopeful that the dates will facilitate in-person programming. This year’s camp weeks will both be held at Inspiration Hills Camp in Burbank, Ohio.

This four-day camp (Sunday–Thursday) features a mixture of therapy sessions and traditional camp activities. Campers (who are accompanied by a parent or caregiver) are divided into groups based on age, and they attend music, speech, occupational, and physical therapy sessions/classes – all structured in a way to maintain the feeling of camp rather than therapy. In addition to therapy sessions, campers have the opportunity to engage in traditional camp activities, such as gaga ball, water slides, swimming, zip lining, obstacle courses, hiking, and fishing. Our evening programming features open mic nights, a mid-week dance, and nightly campfires complete with jam sessions and s’mores! Additionally, parents have lots of time to network with each other and the camp staff, creating a unique and rich experience for everyone.

Camp for the older kids is a mixture of music and arts-related classes and traditional camp activities, such as those noted above. Campers can choose from a variety of opportunities including rock band, chorus, dance, musical theater, drum circles, songwriting, improvisation, composition and drama classes, plus art and recreation. At the end of the week, the campers put on a final show for their parents featuring props, dances, songs, and skits that they created over the course of the week.

Throughout the week, campers are developing confidence in their abilities, and cultivating the tools they need to express themselves and communicate with others.

2021 social events will take a variety of forms as we continue to navigate COVID-19 restrictions and safety measures. Beginning in March 2020, and continuing today, the WSA has only hosted virtual events: camps, the convention and social gatherings have all been online. As we plan 2021, it is unlikely that we will be able to safely hold traditional social events until well into the year – perhaps as late as August or early fall.

With that in mind, we have decided to separate the #Walk4Williams events from our awareness month activities in May again this year, with hope of holding in-person gatherings later. Anyone interested in hosting an in-person walk or other in-person awareness event during the months of August through September should fill out the scheduling form on our site: https://williams-syndrome.org/events

Event and walk questions can be sent to Michele Bauer at: mbauer@williams-syndrome.org. Virtual walks or activities can be scheduled at any time. Thank you for planning and registering events!

Session recordings from our 2020 virtual convention will be available for members to view online, free of charge, beginning on February 1st. Those who prefer to download the recordings for viewing at a later date may purchase the complete convention (29 sessions) on a flash drive through the WSA online store. Available sessions cover a full range of medical, educational, and legal topics. For a full list of available sessions and to access the recordings February 1, click on the button below:

Sarah Giddings has joined the WSA staff as Program Manager. She has been involved with the WSA since her son Matthew was diagnosed in 2003 when he was 13-months-old (now 18), and we are happy to announce her new role.

Before taking on positions for us as one of our regional chair volunteers and as a member of our board of trustees, Sarah experienced the journey of a new parent. She remembers the importance of and connections that happened at the first social gatherings her family attended, as well as the wealth of information she accessed at her first convention, where she connected with the WSA for the first time. She says that experience gave her hope that Matthew had an incredible future ahead, and is excited to contribute to the future of the organization.

Sarah is a Partners in Policymaking graduate, and volunteers as a parent leader for Raising Special Kids. Her professional positions have included leadership roles in learning and development, communications, sales, and events. She currently resides in Maricopa, AZ (outside Phoenix) with her husband Mike and their four children: daughter Taegon, Matthew (WS), Devyn, and Connor. In her spare time, she enjoys music, travel, crafts, and building with Legos.

Sarah's primary responsibilities will include management of our camp, convention and regional programs. She is looking forward to contributing to the WSA in her new role.

WSA wishes regional coordinator and resource specialist, Laura Chesser, all the best as she moves on professionally. Laura has played an integral part in fulfilling our mission for families during her tenure with the WSA, and we wish her every success in her new ventures.

Please contact the WSA office directly for agency and resource assistance.

Our virtual gatherings for adults 18+ via Zoom have been very successful this past year, and we are expanding to include our teen friends in 2021. Beginning in February, Emma Thomas, a special-education educator and volunteer for the WSA who has worked with our teens at camp and conventions, will be leading sessions monthly. February 7 at 3 p.m. ET and the first Sunday of the month thereafter, teens 13-17 are invited to join Emma for activities and socializing. To register your child for these complimentary sessions, click here.

Congratulations to 23-year-old Gianna Morello on graduating with her Bachelor’s Degree in Music/Music Performance from Ramapo College of New Jersey!

Gianna's Capstone project was a research paper and presentation to her class on the emotional connection those with Williams syndrome have to music, and how brain function affects how music is processed. Gianna wants to thank all the WSA members who helped with her research survey about music therapy and contributed data for the project!

In addition to her schoolwork, Gianna has been working as an intern at Verizon, and we look forward to hearing more about what her future holds.

To view her presentation and the research she collected, click the image:

The WSA board of trustees changes slightly each year as a limited number of members complete their terms while others begin their service. As we begin 2021, we would like to thank our outgoing trustees Melissa Murphy, Laurel Rossi and Meagan Miller for their dedication and support of the WSA’s mission during their terms on the Board, and welcome our new members: