From the WSA ED, Dr. Mary
Dear WSA Community,
I am excited to officially be back after my maternity leave and deeply grateful for your support during this special time. Baby girl is doing well despite arriving three weeks early and facing some initial health challenges.
From behind the scenes, I've been collaborating with Sarah Giddings, our VP of Programs & Services, and the team to achieve some remarkable milestones. Our first annual "Weekend for Williams" event raised over $100,000 in just 24 hours, showcasing the incredible support from our community. Although we did not meet our $250,000 target, this is a significant accomplishment and should be celebrated. Many people rallied to make this possible. Thank you to all those involved. We could not do this without you!
As many of you know, the WSA relies heavily on community support to fund our work, and we are in demand now more than ever. Rare disorders like Williams syndrome (WS) are labeled “orphan disorders” by the medical community, meaning there’s little financial incentive for profit-driven companies to support our small group. Public funding for research and awareness is scarce, and private funding opportunities are limited. Most healthcare professionals and educators are either unaware of or under-informed about the condition. When there are so few places to turn to for support, people with Williams syndrome and their families must turn to one another. This is why, in 1982, a small group of visionary parents who understood the compelling need for those affected with Williams syndrome decided to unite and form a community, establishing the Williams Syndrome Association (WSA).
In the coming months, we look forward to sharing our 2023 impact report, which will illustrate in more detail the need, demand, and the work we are doing. For some insight, we responded to over 2,000 inquiries/requests for referrals, support, and services last month alone, and the demand for our support is growing. In 2023, our membership grew significantly, with over 1,400 new members compared to 500 the year before. Our small staff of seven serves over 6,000 families of individuals with WS throughout the year, creating a demanding work environment.
We are two weeks away from this year’s convention and it is set to be amazing - but planning has been exceptionally challenging this year, for so many reasons. Sarah’s recent blog shares more information about some of those challenges. Despite these things, we're confident that the sessions will be informative and the planned activities provide a diverse range of enjoyable options, including cost-effective and even free choices.
Your support means a lot to us, and we look forward to reconnecting at the convention. Don't miss our session titled "The WSA: Pioneering Progress, Cultivating Tomorrow - The Vibrant Evolution of the Williams Syndrome Association and Your Vital Role in Shaping Our Future" first thing Thursday morning to learn more about the WSA! Thank you for your continued support, patience, and dedication to ensuring the WSA remains responsive to community needs and sustainable for the future. Look forward to seeing you in Phoenix!
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The 2024 WSA National Convention is right around the corner! | |
2024 WSA National Convention Updates
Only 2 short weeks left until we're kicking off Convention 2024 at our Opening Fiesta! Final preparation is in full swing, and we'll continue to provide updates to ensure you're informed.
FINAL REGISTRATION DEADLINE
This Sunday, June 30, is the final day for parent/caregiver/professional registration. Be sure to register now to ensure you don't miss out!
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ROOM BLOCK DATES EXTENDED - CLOSE FRIDAY, JUNE 28
If you're still looking for a room for the convention, the room blocks at the Hyatt Place Phoenix/Downtown and the Hilton Garden Inn Phoenix/Downtown were extended until this Friday, June 28. Be sure to reserve your room now to take advantage of the incredibly low convention rates.
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CONVENTION SESSIONS
Our convention this year offers 4 general sessions and more than 65 educational sessions. You're able to review the session schedule now on the main convention page of our website. Watch future email updates for instructions on how each parent, caregiver, or professional who purchased session attendance can create their own personal agenda by registering to attend sessions. The schedule for roundtable discussions will also be released in an upcoming email.
And speaking of schedules, the Convention App will be your go-to resource for all things convention when you're onsite. Watch for the update email that will focus specifically on downloading and using the app.
YOUR QUESTIONS NEEDED FOR Q&A SESSIONS
This year, we are offering a number of Question & Answer sessions around some of the most common topics. These sessions will be led by a panel of experts. To help use the time in the sessions most efficiently, the first portion of each session will be providing answers to questions that were submitted in advance. If you're interested in attending one of the Q&A Sessions listed below, please use the links to submit your questions prior to the session. Please submit your questions by Sunday, June 30.
Medical Questions Q&A: Click to submit questions
Behavior Concerns Q&A: Click to submit questions
Cardiovascular Concerns Q&A: Click to submit questions
Questions for Mary & the WSA: Click to submit questions
PROGRAMMING FOR INDIVIDUALS WITH WS
As we mentioned previously, attendance is much higher than was expected for this year’s convention, which is a good problem to have but made the puzzle of creating the programs for individuals with Williams syndrome and their siblings even more challenging. Here’s information on programming:
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Infants & Toddlers (birth - 5/6 years): This group will receive the same type of onsite programming as they have in past years. Multiple rooms on the 3rd floor of the Hyatt will be converted to a daycare type look and feel, and activities will be provided throughout the day. Parents will pick up their kids for lunch, and snacks will be provided.
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School Age (6/7 - 12 years): “Camp” will be provided by the Arizona Science Center, with lunch and snacks included! All-day fun for kids 6-12 will happen in the Convention Center, directly across from the Hyatt. Parents/caregivers will drop their children off after breakfast at the convention center, then return to the Hyatt for sessions.
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Teens and Adults: This year, Wednesday and Saturday primarily onsite for fun, learning, connecting, and tons of activities! The other two days will be offsite, with a day at the amazing and interactive Musical Instrument Museum and a day at the Arizona Science Center!
Visit the Convention Programs page for details for each program by age.
FAQS ARE YOUR CONVENTION BFFS
Wondering what amenities the Hyatt has or if there's a grocery store close to the hotel? Live locally and not sure how parking works? These questions and more can be answered on the Convention FAQ web page! Be sure to check back frequently for updated information.
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Thank you to our Convention Sponsors! | |
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Innersense Hair Care has taken a pivotal role in making the 2024 WSA National Convention a reality. As the Premier Sponsor, they have dedicated their support to ensure this Convention surpasses all expectations. Their commitment goes beyond financial backing; it extends to creating a unique and immersive experience for every attendee, including a chance for 3 lucky raffle winners (along with their parent/caregiver) to get their hair styled before the Saturday Night Closing Dance (“The Mane Event”) by the incredibly talented Abloom Salon! (More details about this exciting raffle coming soon).
In addition, founder Joanne Starkman will lead parents and caregivers through a motivational session on Taking Care of YOU: The Importance of Self Care. Being responsible for the health and well-being of another person, especially those with additional challenges like Williams syndrome, can be fulfilling and - at the same time - exhausting and lead to overall burnout. Your body does have a natural way to support itself, which is regulated by the parasympathetic nervous system. Activating the calm responses in your body helps to fill your cup so you can be your best!
Finally, to personify the essence of Convention 2024, Innersense Hair Care has selected Morgan Starkman - their Director of Joy - as the ambassador and spokesperson. Morgan embodies the passion, innovation, and inclusivity that define this gathering of like-minded individuals. With a notable presence in the organic and natural beauty products industry, Morgan brings a wealth of expertise and a magnetic personality that will undoubtedly elevate the convention experience for everyone involved.
The positive impact of the Starkman Family who founded and runs Innersense Organic Beauty is profound in our community and beyond. Please join us in extending our heartfelt thanks for their passionate and inspiring support.
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Presenting Sponsor:
Doug & Liz Betz
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Welcome Event Underwriter:
Dan Smith
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Whispering Trails Summer Camp Programs!
Want to join us this summer for camp? Camper applications are live now!
Kids Camp Experience (ages 6-12): July 28 - August 1, 2024
- 12-year-olds can join us for an extra day to learn about teen camp!
Teen Camp Experience (ages 13 - 20): July 28 - August 2, 2024
To learn more or to submit your application, visit williams-syndrome.org/camps.
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Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our July 2024 Zooms!
You can join us for the Tuesday Shenanigans July 23 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo July 25 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 or on the "Join Us" image to sign up.
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Adventure Seekers Cruise 2025
Mark your calendars for June 21 - 28, 2025! Join us for 7 days as we sail the Caribbean on the brand-new Norwegian Aqua. Registration ends this July - don't miss out!
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SUPPORT GROUPS
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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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!
2024 Event Coordinators (mid-May until mid-June)
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Be sure to look for upcoming and local gatherings on our website on the Events page! | |
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The WSA's podcast, The Starry-Eyed Effect, delivers new episodes every other Tuesday, and two new episodes dropped this month!
This month, in Episode 36: Defiantly Choosing Joy with Jess Holsapple and Tabitha Toney
During Williams Syndrome Awareness Month, it's important to recognize that, while our community has much to celebrate, there are also some very real challenges and tragedies. Jen and Brendan are joined by Jessica Holsapple and Tabitha Toney, two mothers who each lost their young boys from complications with Williams syndrome.
Jess continues to share her journey with Griffin at Life in Griffinland on Instagram and TikTok, and on Facebook at Griffin's Mighty Heart Brigade. In addition to training the next generation of nurses, Tabitha serves as the camp nurse for the WSA's yearly summer camps for kids and teens in Georgia.
We thank them for their honesty and vulnerability in sharing their stories with us.
The Canadian Association for Williams Syndrome (CAWS) invited the cast of the Starry-Eyed Podcast to speak at their Annual General Meeting. Jennifer Keeton and Producer Joel Liestman reflected on how the podcast has affected how they parent their children with WS, while Brendan Lemieux spoke on how his self-advocacy has sharpened and his confidence has increased. The show’s emphasis on giving a platform for adults with WS to tell their stories and show the diversity and spectrum of WS has produced much positive feedback from listeners.
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 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!
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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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