From the WSA Interim ED,
Sarah Giddings
Dear WSA Community,
Back to school time brings so many feelings - for kids and parents alike! Sadness that summer is over, excitement and anxiety to meet new teachers and classmates, and sometimes a feeling of comfort to return to a more predictable schedule and routine. For parents of children with WS, it can also mean extra teacher meetings, IEPs, new support teams to train, changes in processes to adapt to, making new friends and acquaintances, and educating others that different doesn’t mean bad, and to always assume competence. For those of us with adult children with WS, or those who have lost children, this time of year is a reminder that the days may sometimes feel long, but the years are short. Take the time to enjoy every moment!
If you a have school-aged child with Williams syndrome, be sure to check out the updated Educational Profile shared in this month’s newsletter. We’re incredibly grateful to have such dedicated experts like Robin Pegg, EdDc, MEd, COTAL, ATP, ROH, Carolyn Mervis, PhD, Bonnie Klein-Tasman, PhD, Karen Levine, Ph.D., and Lindsay van Staden, who partnered to compile and update this powerful tool.
You’ll also find a recap of our rainy, yet fantastic week at our Whispering Trails summer camp from Joel! I was excited to meet so many kids and families, and to watch new counselors create a place in their hearts for our WS community! Special thanks to Camp Twin Lakes, our partner host camp, who supports our camp with a subsidy of $550 per attendee!
This fall at the WSA, as the board works to select a permanent Executive Director, our team will be hard at work planning for the future - creating our theme for 2025, planning the Adventure Seekers trip, revitalizing local support and involvement, creating a formal consultant collaborative, coordinating regional conferences, ensuring we’re here to support you, and yes - kicking off 2026 convention planning! Watch for the opportunity to participate in discussions to provide your thoughts and feedback about our programs and services.
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Whispering Trails Summer Camp 2024 Update | |
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Just two short weeks after the conclusion of the Phoenix Convention, we were off for more amazing programming at Whispering Trails Teen and Therapy Camp in Georgia! Held again at the Camp Twin Lakes facility an hour outside Atlanta, it was a week of fun, music, and learning to roll with changes. This was my first year being part of the planning and execution of camp, facilitating the Drama sessions for the teen camp, and being a dad watching his kiddo go off on his own in his first year of teen camp…to which I showed absolutely no emotion whatsoever. 🤣
We welcomed 25 therapy campers (ages 6 - 12) each with a parent/caregiver and 39 teens with Williams syndrome from all over the country. While the theme of camp was “Fun in the Sun,” Mother Nature had other plans. Every day the schedule needed to be altered due to severe weather conditions. While the storms did cause anxiety in a lot of the campers, each individual comported themselves with bravery and a sense of adventure.
Despite having to switch sessions around to accommodate the summer storms, Campers enjoyed swimming, fishing, boating, the zipline and giant swing, visits to a working farm, and makeshift indoor “campfires,” in addition to their therapeutic and music sessions - all while making friendships that will last a lifetime! By combining camps during the same week, we were able to offer an extra day of camp for our 12-year-old campers and their parent/caregiver to observe teen camp and evaluate their readiness for teen camp.
Thank you to our camp leadership team, program leaders, counselors, counselors-in-training, therapists, and a few amazing volunteers for ensuring camp was an incredible experience for everyone and a special congratulations to Emma Thomas on her first year as Camp Director!
If you’ve never joined us for camp, what are you waiting for? Watch for information about camp dates for 2025 later this year!
Joel Liestman
Director of Family Support
| Updated WS Educational Profile | Students with Williams syndrome have a unique educational profile, with widely disparate strengths and weaknesses. However, the effective utilization of their personal strengths and their innate ability to access technology can go a long way to help improve success in more challenging areas and allow access to age-appropriate curriculums with their same-age peers. This graphic, updated for 2024, provides further insight into students with Williams syndrome. Special thanks to Robin Pegg, EdDc, MEd, COTAL, ATP, ROH, Carolyn Mervis, PhD, Bonnie Klein-Tasman, PhD, Karen Levine, Ph.D., and Lindsay van Staden for their contributions. Please click here for more information and to access a printable version. | |
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A 'Don't Miss' Meeting for Parents of
Children with Williams Syndrome
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- Do you know that behavioral challenges and anxiety can start early in children with Williams syndrome? And that lifelong patterns can be set without proper intervention?
- Do you know how to navigate the IEP process? Or how to help your adolescent implement strategies for continued educational success?
- Do you have the latest information on managing medical and behavioral aspects of puberty?
The MGH Williams Syndrome Program Co-Directors, Drs Barbara Pober and Robyn Thom, are hosting Day 1 of Boston Williams Syndrome Weekend on Saturday 21, 2024.
Don’t miss this important meeting especially if you could not attend the National WSA Convention this past July! In your own “backyard”, you will learn from experts, interact with other parents, and have the opportunity to talk directly with adults with Williams syndrome.
A few words about the speakers… They are a team of experts with a combined 100+ years of Williams syndrome-specific experience. Together, they have treated more individuals with Williams syndrome than any other group in the country. See the accompanying Invitation and Program for further details.
Register today!! Remember, this event is free to attend!
Very best,
Dr. Barbara R Pober, Medical Geneticist
Co-Director, MGH WS Program
Dr. Robyn Thom, Psychiatrist
Co-Director, MGH WS Program
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Monthly Virtual Adventure Seekers Zooms
It's time to register for our September 2024 Zooms!
You can join us for the Tuesday Shenanigans September 17 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo September 19 at 7pm ET/ 6pm CT/ 5pm MT/4pm PT.
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Join the Adventure Seekers Email List
Are you an adult with Williams syndrome, age 18 or older, or their parent or caregiver, and want to ensure you never miss out on information about our Adventure Seekers program? Be sure to join our Adventure Seekers email list! This is how you'll learn about our monthly virtual meet-ups, trips, learning opportunities, in-person gatherings, and more! Click here to sign up.
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Adventure Seekers Cruise Update
Information on hotels near the cruise port (including links to a special WSA Group Rate is available on the 2025 Adventure Seekers Cruise page on the WSA website at williams-syndrome.org/adventure-seekers-cruise-2025. Scroll down and find the Hotel Information button!
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Are you looking for ways to connect with other parents/caregivers? Our topic-specific networking groups allow parents and caregivers of people with WS with specific needs to meet and discuss challenges and strategies. Our virtual support groups gather monthly to discuss experiences, share thoughts, and offer private "peer-to-peer" support. The groups are facilitated by a WSA staff member, Family Support Volunteer, or professional in the specific area of focus. Periodically, a medical advisor specializing in the topic may join the discussion. Groups are created based on the needs of our WS community. If you haven't had a chance to attend, we encourage you to join us.
Also, please join the Family Support Forum on the WSA's website to connect with group members between meetings and ask any other questions related to Williams syndrome.
If you have any questions or have specific topics you'd like to suggest, email familysupport@williams-syndrome.org.
Please register below to receive the Zoom link for this month's group. The group will meet monthly, and you'll need to register each time to receive the meeting link.
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All groups meet 8-9 PM ET. Click here or on the image to above 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.
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Thank You, Event Coordinators! | |
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The WSA's podcast, The Starry-Eyed Podcast, delivers new episodes every other Tuesday, and two new episodes dropped this month!
This month featured two live episodes! Episode 38 was recorded live in Phoenix at the 2024 WSA National Convention. Jen, Brendan, and Producer Joel welcome Emmy Coggshall and Chris Baxter to discuss their upcoming movie "I've Got Next" and the aspiration of inclusivity in front of and behind the camera. Then Gianna Morello joins the gang to talk about being on the Board of Trustees and a leader in the WS community.
Jen and Producer Joel are live for Episode 39 at the WSA's Whispering Trails Camp for the Teen Camp's "15 Minutes of Fame" Talent Show! Join them as they channel their inner Gail and John from Pitch Perfect and provide commentary and cheers for the performers.
Honestly we don't know if this show will be any good on audio, but we had a lot of fun recording it and we wanted to give people a taste of what WSA Camp is all about!
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
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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
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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.
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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)
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Research Opportunity #2:
Aging in Williams Syndrome
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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
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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:
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Shop WSA Awareness Merch
This merchandise was created to get people talking and learning more about Williams syndrome. Show your support for Williams syndrome with official WSA Awareness Merch!
Just in time for back to school-our backpack! A convention favorite! Shop WSA offers a range of products promoting Williams Syndrome Awareness from yard signs to t-shirts.
Wear your support proudly!
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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!
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