From the WSA ED, Dr. Mary
As we approach the horizon of the upcoming new year, I want to take a moment to reflect on the progress we have made as a community and express my gratitude for your ongoing support. Together, we have accomplished a great deal in the past year, but there is still much more work to be done.
Throughout the year, I have had the privilege of meeting many families within our community, and I am continually inspired by your resilience and determination. At our Adventure Seekers Orlando trip, I had another opportunity to meet with many of you. I truly value and respect each one-on-one moment I am able to have. Your stories and experiences drive me to work harder and advocate for the changes we need to make our community even stronger.
As we head into 2024, it is imperative to know that the future of the WSA is and will continue to be defined by YOU, the members of our community.
2024 will be a special year for us as we come together to connect, learn, and grow. The future is bright, and there are exciting things in store for the WSA, especially in light of the upcoming biennial convention. I eagerly look forward to meeting more of you and hearing your ideas and perspectives during our time together in Phoenix. Together, we will shape the future of our community.
In the coming months, I will share more information about our initiatives for 2024. These initiatives will focus on strengthening our pillars and making a positive impact, not only within our community but also at the local level. I believe that by working together and staying committed to our shared goals, we can create meaningful change and improve the lives of everyone in our community.
Once again, I want to express my heartfelt gratitude for your ongoing support. It is because of your dedication and involvement that we have been able to achieve so much. As we look ahead, let us continue to stand together, united in our mission to build a better future.
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Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our November 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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Event Spotlight: Adventure Seekers Orlando | |
More than 350 people from Canada, Norway, and 36 states, joined us in sunny (and occasionally rainy) Orlando September 28 - October 1 for our 2023 Adventure Seekers trip! 145 adults with Williams syndrome, along with their families and caregivers, enjoyed time to socialize, reconnect with old friends, make new ones, and create connections that will last a lifetime! For a number of families, this was the first WSA event they’d ever attended and the first time they’d met others with Williams syndrome! | |
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We opened our event with an ice cream social and buzz around where everyone would spend their time during the trip. During the next few days, Adventure Seekers visited the Walt Disney World theme parks, Disney Springs, Sea World, Universal Studios Resort Orlando, Gatorland, went outlet shopping, took airboat rides, had a blast in the hotel pool, and took over the hotel lobby with their usual enthusiasm! We ended the weekend with an epic dance party! The Mazake Squad from the Florida Garrison of the 501st Legion delighted our Adventure Seekers with a surprise visit and amazing photo opportunity, and DJ Mallory had the dance floor hopping the entire night!
There was laughter, tears, tons of yummy party snacks, and endless smiles!
A special thank you to the Cindy Wrobleski Endowment Fund for sponsoring our DJ and dance floor during the closing party. Their generosity, and the generosity of others like them, allow us to continue to host crucial programs like this for our adults with Williams syndrome.
Be sure to check out Episode 19: Live from Orlando with the Adventure Seekers of The Starry-Eyed Effect Podcast, where producer Joel was live in Orlando. Jen and Brendan chatted with about a half-dozen attendees about what this trip meant to them. Enjoy!
We can’t wait for our next trip!
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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.
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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All groups meet 8-9 PM ET. Click on a group below to register. You must register to attend. | |
Spotlight: Williams Wednesday Highlights | |
Leam Nathan Ramos Sanchez
Meet Leam Nathan Ramos Sanchez, a remarkable 5-year-old with a heart full of love and a passion for tools!
Leam's eyes light up when handed a tool, and he's always ready to lend a helping hand. He has a special talent, too! He's the ultimate birthday singer, and he can't wait for those special moments when he gets to serenade someone with a heartfelt "Happy Birthday!"
Leam's journey comes with unique challenges, but he faces them with determination and love. He's still learning to navigate social interactions with other kids and sometimes needs extra support. But one thing's for sure—he's making amazing daily progress!
What truly warms his family's hearts is Leam's deep bond with his 8-month-old sister. After a long day at school, the first thing he does is give her a big, loving hug. And when it's bedtime, he's there with a goodnight kiss.
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Cameron Kohler
Meet Cameron Kohler, a shining star in our community! At just 23 years old, Cameron has embarked on an exciting journey, recently landing a job as a courtesy clerk at Kroger in Monroe, MI.
Cameron's enthusiasm is contagious, as he's thrilled to be back in action, interacting with people, and making that hard-earned cash! He's a ray of sunshine and positivity, and his dedication shines through in every task he undertakes.
Cameron's workweek keeps him busy, with shifts ranging from 12 to 16 hours per week. He is also working hand in hand with a job coach from Next Step Solutions, a dedicated job developer working closely with Michigan Rehabilitation Services. Their partnership is a testament to the power of teamwork and support, turning dreams into reality.
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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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National Estate Planning Awareness Week
October features National Estate Planning Awareness Week - a time to raise awareness about the importance of estate planning and to encourage everyone to create a plan for their future. Estate planning is an important part of everyone’s financial planning, not just the wealthy or the elderly. By taking the time to create an estate plan, you can ensure that your wishes are carried out and that your loved ones are taken care of after you pass away.
By supporting the WSA with a Legacy Gift, you help ensure this organization continues helping those with Williams syndrome by expanding and enriching our services and programs well into the future.
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Thank You, Walk and Event Coordinators!
We're overjoyed to announce the tremendous success of the walks and events, uniting the community and spreading awareness. A huge shout-out to our phenomenal coordinators – none of this would be possible without them!
2023 Walk and Event Coordinators (mid September-mid October)
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Stephanie Turmel, Kayla Lewis and Courtney Song
Boston Walk
Wendy Montgomery
Yucaipa Walk
Scott Ottenheimer
Chicago CarnivALL
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Kristin Boxall
Midwest Family Picnic
Ashley Bennett-Sigmund
South Texas Fall Fest
Vanessa Casper and Kelly David
Philly Fall Fest
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Their passion and hard work brought us together for this important cause. They brought together our community, raised funds, and supported individuals with Williams syndrome and their families.
These events go beyond numbers; they create lasting connections and strengthen our community spirit. We're incredibly grateful to our coordinators for their unwavering commitment. They truly make a difference, and we're fortunate to have them.
Are you keen on leading a walk or event in your local area? Come forward to become a coordinator, and let's work together to make a positive impact, one action at a time!
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Be sure to look for upcoming and local gatherings on our website on the events page! | |
Upcoming Event:
A Night of Love, A Celebration of Life
Be sure to look for upcoming and local gatherings on our website on the events page!
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2024 WSA Convention
Get ready to have a blast at the WSA National Convention next July in Phoenix, AZ! We're in full swing with the planning and will keep you posted on all the exciting details. Keep watching for emails and checking with the convention page on the website.
Where: Hyatt Regency Downtown Phoenix
When Can I Book: For the sweetest deals on your room, hang tight and wait for our special convention block to open up towards the end of 2023. We'll send you a message as soon as those rooms are up for grabs! Stay tuned!
Concerns Around Heat: Phoenix’s convention center and our hotel, the Hyatt Regency Phoenix, have state-of-the-art indoor facilities. These venues are equipped with advanced cooling systems (indoors & outdoors), ensuring a comfortable environment for attendees despite the high temperatures outside. It is important to note that we are taking precautions to ensure the comfort and safety of attendees during the event. This includes providing ample hydration stations, scheduling indoor activities, outdoor misters, VERY short walking distances, and offering transportation options to minimize exposure to any extreme temperatures. Plus, check out these additional tips to beat the heat.
COVID-19 Information and Instructions: The safety of our members is a top priority for the WSA convention team. At this time, proof of COVID-19 vaccination is not required to attend. Masks are welcomed but not required. We intend to follow city, state, and federal guidance. Please note that we may need to make adjustments to our safety policies if health mandates change.
Convention Scholarships: The WSA offers scholarships for our biennial conventions. Generally, we will be providing need-based scholarship awards to both individuals and families at various levels (up to a maximum award of $2000) to help offset convention expenses for educational sessions and programs (parents/caregivers and children/adults with WS and their siblings) and travel. Optional items are not covered by scholarships. Our general scholarship fund information is below, so please continue with that if it applies to you. The PM Minority scholarship fund provides special funding for Black families of a child with Williams syndrome. Established by a generous peer, the fund is intended to increase access to WSA programs for families in financial need. Funding priorities are for African-American, Caribbean, African, or Black Latino (from Latin American countries) families. Central and South American, as well as Caribbean Latinos, may also apply. Watch for information in early 2024 for scholarships for our next convention.
If you're interested in learning more about our 2024 scholarships, click on the button to be added to our mailing list.
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Did You know?
On the website, if you click "español" in the top menu, you will see every WSA resource that has been translated into Spanish.
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WSA Podcast: The Starry-Eyed Effect
Thank you everyone for listening and watching. We hit 5,000 downloads plus over 5,500 views on YouTube.
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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 20: Gratitude and Gettin' Fancy with Callie Truelove, Camille Fortunato and Anthony Filipazzo, Jen and Brendan catch up with Callie Truelove to share gratitude for red carpet premieres, celebrating stories, and everything surrounding the release of Truelove: The Film. Then, Joel joins Brendan to talk to Camille Fortunato and Anthony Filippazzo about building community and the importance of medical research into WS with the AF Research Grant and the A Night of Love, A Celebration of Life event on November 3rd in Brooklyn, NY.
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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Truelove: The Film is now available to watch for FREE on YouTube, Tubi, Plex, and Amazon Prime! Watch it today! Also, check out the feature article in People Magazine!
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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 four 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:
Language Learning in Williams Syndrome
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The Language and Cognition Lab at Johns Hopkins University is recruiting adolescents and adults with Williams syndrome for a new study investigating language learning! This study is for people with Williams syndrome 12 years or older, and it takes place entirely on Zoom. Participants will attend four Zoom sessions and complete language-related tasks that take approximately 30 minutes each. Participants will be compensated with a $30 Amazon gift card. If you are interested, please contact Rennie Pasquinelli (PhD candidate) at rennie@jhu.edu. | |
Research Opportunity #4:
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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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. We’re often in meetings or on calls with other members, so if you reach our voicemail, please be sure to leave a message so we can get back to you.
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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