From the WSA ED, Dr. Mary

A big shout out and THANK YOU to each of YOU for your hard work during May. From classroom presentations to bridge lightings, with your help we were able to hold more than 275 awareness initiatives across the country. The numbers show that through these national efforts, we are creating real impact. We were featured in the media, had more than 25,000+ people attend in-person events, more than 90,000+ unique visits to our social media sites, and more than 36,000+ website visits, of which 88% were new. We applaud your efforts to educate and create awareness. Together there is true power in numbers and we are confident that by next May, we will have even bigger breakthroughs to celebrate!

If you held/are holding an awareness event of any kind, we'd love to hear from you and be able to share your experience. Send us more details at: info@williams-syndrome.org

Just because awareness month has come to an end doesn’t mean our work is over. Awareness is part of our year-round programming and we need your help. As of the end of May more than $250,000 from awareness events has been raised, which is incredible- but only makes up 10% of the goal for our annual budget. Every individual with WS deserves to live and lead a healthy and happy life and by contributing to the WSA, you are making that possible through our programs & services, education & awareness efforts, and clinic care & research initiatives.

WSA Research Partnership with the University of Wisconsin Milwaukee

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 visit the following link: https://sites.uwm.edu/bklein/williams-syndrome-studies-open-to-enrollment/

We are also supporting a Community-Based Participatory Research project with Black Families of Children with Williams Syndrome that was initiated based on Brianna’s interests in improving the experiences of Black families of children with Williams syndrome.

We are grateful to Brianna Young, Bonnie Klein-Tasman, and the UWM Child Neurodevelopment Lab for their commitment to improving the lives of children with Williams syndrome. We are also grateful to the WSA members who are making this research possible through their generous donations.

From the WSA Board of Trustees, Secretary,

Matt Barlow

Dear WSA Members and friends,

I am writing to share some exciting news about the recent Williams Syndrome Association (WSA) Board of Trustees (BoT) Spring Retreat.

The retreat was a great success, and we accomplished a lot. We had multiple working sessions to problem-solve and discuss our focus areas, including community access/scholarships, communications, and family support. We also combined our in-person meeting with an opportunity to support a significant fundraising event and had committee meetings in the areas of research, member support, and diversity and inclusion.

We were thrilled to have Amy Jin Johnson on site with us. Amy is the executive director of Project Implicit, a Harvard-based research collaboration that studies stereotypes and prejudice. The WSA has initiated a collaboration to help us understand, measure, and mitigate the impact of bias. From this initial conversation, we've pinpointed membership as a key area of focus for our work together. Amy will be engaging with us throughout 2023-2024 to explore strategies for mitigating bias in our outreach and communication efforts. We look forward to formulating an actionable plan and soliciting feedback from WSA Board Members, staff, and members to foster a more inclusive membership base. 

This was our first in-person meeting to welcome new trustees Aaron, Jenty, Gianna, and Rebekah! We were grateful to have an extended working session with Jan Glick, of Jan Glick and Associates, who has been supporting us since we began the ED search ~2 years ago with governance structure, leadership transitions, and overall operational health.



The retreat was a great opportunity for the BoT to work together, learn and develop, and discuss governance and transition. We are grateful for the hard work and dedication of the BoT, and we are excited to see what we can accomplish together in the coming year.

Key themes from the retreat included:

• Working together: The BoT, Executive Director, and WSA staff worked together to problem-solve and discuss our focus areas.
• Professional support: We received facilitated training and governance support from Amy Jin Johnson and Jan Glick.
• Transparency: We practiced our "3 C's" - connecting, collaborating, and communicating!

We are grateful for the support of our members, and we look forward to working with you to continue to make a difference for people with Williams syndrome and their families.

Sincerely,

Matt Barlow

Secretary & The WSA Board of Trustees

Whispering Trails Therapeutic Camp Experience: 

July 30 - August 3, 2023

Ages 6-12

Camp Twin Lakes in Rutledge, GA

Therapy Camp is a 5-day/4-night program designed for individuals with WS ages 6-12. Campers attend camp with one parent and stay together in cabins with other campers & their parents. 

Throughout the week, campers will have the opportunity to participate in a variety of programming led by both WSA and campsite staff. 

During the day, campers will take part in various sessions led by our trained therapists (physical therapy, occupational therapy, speech therapy, & music therapy). These sessions will demonstrate best practices for working with young individuals with WS. Campers will also be able to participate in various traditional camp activities, such as archery, biking, boating, cooking, horseback riding, rock wall climbing, swimming, etc.

In the evenings, campers will have the opportunity to perform for their peers, or just help cheer them on! And of course, we will have campfires, s’mores, and lots of music!

Whispering Trails Teen Camp Experience:

July 30 - August 4, 2023

Ages 13-20

Camp Twin Lakes in Rutledge, GA

Teen Camp is a 6-day/5-night program designed for individuals with WS ages 13-20. Campers attend camp without a parent and stay together in cabins with other campers & counselors.

Throughout the week, campers will have the opportunity to participate in a variety of programming led by both WSA and campsite staff. 

The daytime is broken down into scheduled blocks and activity periods. These can involve activities such as art, band, chorus, dance, drama, musical theatre, small musical groups, and rec games. Other traditional camp activities such as archery, biking, boating, cooking, horseback riding, rock wall climbing, swimming, etc. will be scheduled for all campers.

In the evenings, campers will have plenty of opportunities to share in performances with their peers, cheer each other on, hang out by the campfire, eat s’mores, and make lots of music!

The end of the week culminates in a show put on and led by our campers! This is their opportunity to share and show off what they have been working on all week!

Work or Volunteer at One of Our Camps

The Williams Syndrome Association only accepts applications to work at our camps. For volunteering and working at the non-WSA camps, visit their websites directly.

For all positions at Whispering Trails Music Camp, click the button below to apply.

NOTE: 1) This link is for all staffing positions, including ALL staff & Counselor-in-Training (CIT)/Junior Counselors; 2) Before applying for any staffing position, you will first need to make an account.

Guidestar Platinum Status

We’ve just earned our 2023 Platinum Seal with Candid! Check out our #NonprofitProfile to see the great work we do for our community. We want to make sure you have the progress updates you need to confidently support our work with trust and confidence.

Are you looking for ways to connect with other parents/caregivers? Our support groups gather monthly virtually to discuss experiences, share thoughts, and offer support: private "peer-to-peer" groups. Periodically, a medical advisor specializing in the topic may join the discussion.

The topic-specific groups offer a great way to meet with parents/caregivers going through similar experiences. If you haven't had a chance to join, we welcome you to try a group.

New Groups Added! Learn more about the two new groups added:

WS Grandparent Family Support Group

We know that it takes a team of people to care for a child or adult with Williams syndrome (WS), and grandparents often play a vital role. The WS Grandparent Family Support Group is a place where grandparents can share ideas and experiences, and offer support in navigating the complex family dynamics involved in raising someone with Williams syndrome. The group will be facilitated by Julie Oglesbee, the grandmother of a wonderful young man with WS and an active volunteer raising awareness in her community.

Parents/Caregivers of Only Children with WS

When your only child has Williams syndrome, one of the biggest fears is wondering who will be there for your child after you’re gone. If you are a person with Williams syndrome, life after the stable care of your family can seem daunting and overwhelming. The Only Child Family Support Group will meet monthly to discuss strategies, support anxieties, and share ideas about how to create a community of support that is trustworthy and steadfast. The group facilitators are WSA Director of Family Support Joel Liestman and WSA Board of Trustee member Bill Palmer, who each have an only child with Williams syndrome.

The dates for June Groups are listed below and on the WSA Website. There will be no groups meeting during the month of July. We will resume programming in August.

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

Monthly Virtual Adventure Seekers Meeting Zooms

It's time to register for our June 2023 Zooms!

NEW! This year, you'll use the link below that corresponds with the date you'd like to attend to register for the Zoom. You'll register to receive the links every month.

June Zoom Meetings

You can join us on either Tuesday, June 20 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or Thursday, June 22 at 7pm ET/ 6pm CT/ 5pm MT/ 4pm PT.

To register click on the link below for the day you want to attend.

June 20, 4pm ET: Adventure Seekers - Register here



June 22, 7pm ET: Adventure Seekers - Register here

Upcoming Events - Highlights

Check out the highlighted events below - you can find more events at our website on the events page!

How to host a walk. Learn more here.

How to raise awareness and funds if you don't have a walk near you. Find out more here!

Share Your Story

We know there are great things happening in the lives of our friends with Williams syndrome! Please share your stories with us, so we can share them with the world! Click on the button below to find out more and share.