From the WSA ED, Dr. Mary
While we’ve been working on the 2024 WSA Convention for quite some time, we recently did a site visit to figure out logistics, plan programming, and see the newly renovated areas of the Hyatt Regency in Downtown Phoenix. There are two undeniable truths about next year’s Convention: the outside air will be hot, and what we have planned will be very cool.
Millions of people live safely in the Valley of the Sun, and many other large organizations host conferences there in the summer. For example, the National Down Syndrome Congress, which has many medically fragile members, will host their 2024 conference the week of July 25 – 28 in Phoenix. Please know that we take the heat in Arizona very seriously, and we are planning programming accordingly.
The highlight of the trip was the in-person Convention Committee Kick-off meeting! The Arizona Williams syndrome community is excited and eager to undertake the challenge of creating an informative, fun, engaging, and memorable event. We look forward to utilizing their skills, gifts, and talents to capture a uniquely Arizonan energy right in the heart of Downtown Phoenix. We will utilize the convention center across the street from the hotel for some of our larger programming. At the same time, the educational sessions stay on-site in the hotel meeting rooms. Both locations have advanced cooling systems (indoors and outdoors!), ensuring our comfort no matter what the temperature outside. When attendees do travel to the amazing off-site programming, air-conditioned waiting areas and transportation will keep everyone delightfully refreshed.
This convention's nerve center will be the second-floor atrium. With its wide open layout, areas of comfortable seating, natural light, and access to most of the meeting rooms, we all agreed this is the most likely spot for meaningful connections between families, impromptu song sessions, grabbing water at one of the many hydration stations, and engaging with local and national vendors about a myriad of topics and services.
The theme of the 2024 WSA Convention is “Rising Together,” and I, for one, cannot wait to see how high we can go! The Williams syndrome community is dedicated, strong, diverse, and full of ideas. Together, we will grow. Together, we will rise.
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WSA Board of Trustees:
Nomination Process and Engagement Opportunities
The Williams Syndrome Association Board of Trustees provides organizational oversight and works closely with staff to establish the vision and carry out the mission of the WSA. Each Fall, we look forward to nominating new members with fresh perspectives and new skills to help us reach our goals. Typically, up to four seats are available, and we receive as many as twenty applicants annually.
Please join our listening sessions to learn more about volunteering for the WSA Board and additional WSA engagement opportunities in preparation for a future open Board member position.
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If you are unable to attend the information sessions or already know you want to apply to be considered for a board position, click the button below. | |
Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our October 2023 Zooms!
You can use the link below that matches the date you'd like to attend to register for the Zoom.
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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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Program Spotlight: Family Support Network | |
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You Are Not Alone
Whether you are an individual who experiences Williams syndrome (WS) or a caregiver, it’s important to remember that you are not alone on this journey. At the Williams Syndrome Association (WSA), we strive to create a world where all family members feel understood and know there are others who “get it.” You will have many questions along your journey, and the WSA is here to help you find the answers you seek or offer the support you need to keep going.
So whether you are newly diagnosed, wondering if there is anyone like you in your community, or would like to develop a friendship with someone with shared experiences, you’ve come to the right place. The WSA has the country’s largest network of volunteers and resources around WS.
Interested in volunteering in our Family Support Network? Call our office or email familysupport@williams-syndrome.org.
The WSA has a rich history of families supporting each other throughout their journeys. The WSA's Family Support Network (FSN) was established in 2021 to formalize this experience.
The FSN is a nationwide network of more than 150+ family support specialists and volunteers across the country who are available to help you connect with your community and available resources.
The FSN offers three core programs.
- Local support specialists
- Local social and awareness events
- Family support groups
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Local Support Specialists
The national community of families impacted by Williams syndrome who are members of the WSA is 5,000+ strong. In your immediate community, you may be the only family with a child with WS or one of just a few.
Volunteers (parents, caregivers, grandparents, and family members) have been identified in each state to help provide resources, personal information, and support. These Family Support Network volunteers are joined by many others who facilitate annual gatherings such as meet and greets, awareness walks, and fundraising events.
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To connect with someone in your area, visit the WSA website, click Get Involved, then Make Connections. Or use this QR code.
Local Events
Attending an event is one of the best ways to connect with other families and people with WS, who can provide lifelong friendship and support. Countless WS events of some kind are going on across the country each month.
The WSA, with the help of volunteers across the country, hosts a wide variety of events, including educational events, family picnics, walks, fundraisers, and more.
You can visit our website for a calendar of events happening near you.
Want to get involved and help plan an event or get involved in WS Awareness Month? Check our website, call the office, or email events@williams-syndrome.org.
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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.
New Group Added! Learn more about our new group:
Complex Communicators and Feeding Challenges - Family Support Group for Parents/Caregivers:
Some individuals with WS take a bit longer to develop speech, muscle tone for feeding, and listening and speaking skills. However, these individuals still eat and have ideas and opinions to share! The Complex Communicators and Feeding Challenges (CCFC) Family Support Network is where parents and caregivers of individuals with WS who are non-verbal, have speech or feeding issues, or use non-traditional methods of communication can share ideas, support each other, and meet with professionals.
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.
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.
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SEPTEMBER / OCTOBER GROUPS | |
All groups meet 8-9 PM ET. Click on a group below to register. You must register to attend. | |
Spotlight: Williams Wednesday Highlights | |
Kate Wallace
Meet Kate Wallace, a 24-year-old shining star from New Albany, Ohio.
As a music enthusiast, bowling pro, and swimming champ, Kate's zest for life is truly inspiring.
One of Kate's most recent accomplishments is joining the team at Meijer. Since joining, she has ensured the store looks great. Her daily mission includes straightening products, correcting misplaced items, and maintaining a neat appearance.
Kate covers a significant portion of the store, including the health and beauty, seasonal, toy, sporting goods, and pet sections. Her absolute favorite is the toy section!
One of the best things about Kate's job is that she gets to work at her own pace, ensuring she delivers nothing but the best.
A big shoutout to Sheila Wallace for sharing Kate's remarkable story. Let's celebrate Kate's determination, passion, and contribution to making Meijer a better place for all shoppers!
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Presley
Meet Presley, the amazing 3-year-old from Cookeville, TN!
His journey has been inspiring to the people in his life. Presley LOVES his therapy team; his family couldn't be happier to share his story.
It hasn't always been smooth sailing, but Presley has come a long way. He now eagerly runs into therapy and hates to leave - a testament to his progress.
Presley's family is grateful for the dedicated therapy team that never gave up on him, even when times were challenging. They go above and beyond, always finding the best strategies to meet his unique needs.
Let's shout out to Presley, his family, and his extraordinary therapy team for their unwavering dedication and the incredible progress they've achieved together!
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Garret
Meet Garret, a 3-year-old friend from Medina, OH. Garret is a shining star who lights the world with his infectious smile and spirit.
Although he's still discovering his favorite things, he loves his musical toys and anything that goes vroom-vroom!
This little warrior has faced some tough challenges, having been diagnosed with infantile spasms. Garret's journey has also included being g-tube-fed, but the unwavering support of his family has helped him overcome.
Thank you, Nicole Meloy, for sharing Garret's story with us. Your love and dedication shine brightly, and we're grateful to be a part of Garret's journey.
Let's send Garret our love, positivity, and cheers for many more adventures filled with music and wheels!
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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.
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SparkGood Program
We're excited to share another way you can support the WSA and the work we're doing! Donating to the WSA through the Walmart Sparkgood Program is simple, easy, and impactful!
Please listen as our Director of Special Events and Legacy Giving, Ann Marie, shares how the program works. We thank you in advance for your support! Often the smallest actions can create the biggest ripples of change.
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Thank You, Walk and Event Coordinators!
We are thrilled to share the incredible success of the Walk for Williams event, and we owe it all to our amazing coordinators!
2023 Walk and Event Coordinators (August-mid September)
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Jordan Wiecki, Rachel Bird-Johnson, Kristen Cagadas
Madison Walk
Erin Potter
Kansas City Wak
Deliah and Ben Otte
Fond-du-Lac Walk
Shonna Taylor
Belleville, IL Walk
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Katie Utoft and Joel Liestman
Twin Cities Walk
Katie Utoft
Upper Midwest Twins Game
Lindsey Brinton
Great Plains Swim Day
Abigail Oesterling
Dirty Ramen Skate Shops Band Bash
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Stefanie Mueller
Buffalo New York Picnic
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Their passion and dedication ignited the spark that brought us together for this meaningful cause. Through their hard work and enthusiasm, they united our community and raised essential funds to support connections, research, and resources for individuals with Williams syndrome and their families.
Beyond the numbers, the Walk for Williams creates lasting connections and strengthens our community spirit. To our coordinators, we extend our deepest gratitude for their unwavering commitment. Their efforts make a genuine difference, and we are grateful to have them as an essential part of our community.
Are you interested in coordinating a walk in your area? Step forward to be a Walk for Williams coordinator, and let's make a difference, one step at a time!
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Upcoming Events - Highlights
Check out the highlighted events below - you can find more events and local gatherings at our website on the events page!
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Saturday, September 30th
Yucaipa Walk 2023
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Sunday, October 15th
Chicago CarnivALL
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Saturday, October 21st
(RSVP by 10/18)
South Texas Fall Festival
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Sunday, October 22nd
Philly Fall Fest
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Ready FORE More Golf?!
Our WSA Golf Tournaments have been so successful, and Leo's 4th Annual Golf Tournament is still tee'd up! Check it out below and tell your friends.
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Saturday, September 30th
Leo's 4th Annual Golf Tournament 2023
Hermitage, Pennsylvania
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Harness Round-up Program
Your small change can make a big impact over time! Automatically round up your purchases, both in-store and online, and donate the difference to the Williams Syndrome Association!
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2024 Pre-Convention Interest Survey
We can’t wait to see everyone’s faces at the WSA Convention next July in Phoenix, AZ! The laughter and love will be like a cool breeze blowing through the air-conditioned rooms.
To make the event as meaningful as possible, we’re aiming to include everything you want to learn about and participate in. We want to honor our WSA members by providing the highest caliber speakers and presenters discussing the topics you most want to hear.
Click on the button and let your voice be heard! It will be active until September 29th.
Thank you, we look forward to hearing from you!
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Did You know?
On the WSA Website, you can find resources specific to what you are looking for through our search and filter.
Director of Family Support Joel Liestman’s cousin Skater Glenn took the Search Bar for, as he put it, “a gnarly sesh!”
Check out the rad video below and have your mind blown!
Note: This is in no way a character Joel came up with inspired by his many wigs as he does for the Adventure Seekers meetings.
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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!
Last week, in Episode 18: Volunteering with the Gang, Producer Joel joins Jen and Brendan for an old-fashioned hang where they talk about all the events going on with the WSA and with all the amazing volunteers around the country. From hosting events to becoming part of the WSA Board of Trustees, there are many ways to get involved.
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. | |
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Help healthcare professionals better support the Williams Syndrome Community transitioning to adult-centered healthcare with your input.
You are invited to participate in a graduate research study exploring the current state of the healthcare transition for adults with Williams syndrome, facilitated by Andrea Johnson, a graduate student at the University of South Carolina pursuing a master’s degree in Genetic Counseling. Her research aims to learn more about the experiences and perspectives of adults with Williams syndrome to determine patient and caregiver satisfaction with adult care. In addition, she hopes to use this study to describe the needs of the Williams syndrome community so that healthcare providers can serve as advocates during the transition to adult care.
This online survey is intended for caregivers of an adult (18+) with Williams syndrome. A caregiver includes but is not limited to a parent, grandparent, sibling, family member, or paid care provider who looks after an individual with Williams syndrome and facilitates/has facilitated their transition to adult care. Therefore, questionnaire responses that only come from the intended audience will be included in the study analysis.
If you have any questions regarding this research, please email Andrea Johnson at transition2adultcarews.uscstudy@gmail.com
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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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Reminder: We are where you are!
The WSA has moved to a distributed team working remotely. This allows us to meet you more frequently where you are, in your communities!
We know there will still be a need to send physical mail to the WSA, so we decided to go back to our roots! The WSA was incorporated in New Jersey, so we’re excited to share a new mailing address where our mail will be safely processed and organized:
Williams Syndrome Association
243 Broadway #9188
Newark, NJ 07104
Our phone number hasn’t changed - contact us at 248-244-2229 or 800-806-1871. Our enhanced phone system allows you to directly reach whom you need - by topic or name of staff member.
You can also reach us by email!
Interest in hosting an awareness walk? Email Denise: dcallen@williams-syndrome.org
Need family support or program information? Email Joel at jliestman@williams-syndrome.org
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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.
You can 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.
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Sharing the hair love for many years, our partner Innersense Organic Beauty continues to provide the WSA with sponsorships and financial contributions throughout the year. Year after year.
The WSA is a partner with Innersense through its affiliate program! Click here or on the image above to start shopping for amazing hair products while supporting the WSA.
Use this code: LOVEWSA for 15% savings on your first purchase from Innersense Organic Beauty. *Note this code only works on your first purchase and for shipping within the US only.
The positive impact of the Starkman Family who founded and runs Innersense Organic Beauty is profound in our community and beyond. Joanne and Morgan Jane Starkman are guests on The Starry-Eyed Effect Podcast, Episode 8. Morgan is the Director of Joy for Innersense and once you meet her, you'll see why!
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