From the WSA ED, Dr. Mary
In the spirit of this festive season, I am reminded of the warmth and camaraderie that unites us. Williams syndrome is a unique journey that can present its challenges, but it is through shared experiences and our community that we find solace and inspiration.
This year has been filled with both triumphs and trials; during these moments, our community's strength shines brightest. Whether through educational programs, support groups, or the simple act of reaching out to one another, we have repeatedly demonstrated that no one in our community walks alone.
I extend my most profound appreciation to every individual, family, and organization that has made our community a place of unwavering support and understanding—your contributions, whether big or small, have impacted the lives of those affected by Williams syndrome.
Thank you for being an integral part of the Williams Syndrome Association. I look forward to another year of shared experiences and collective strength. There will be exciting new ways to engage in the new year, and we need your support. We can only do this with you.
I wish you and your loved ones a holiday season filled with joy, warmth, and the knowledge that we make a significant difference together.
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The WSA is currently seeking a compassionate and detail-oriented Intake Coordinator to join our fully virtual remote team. As the Intake Coordinator, you will be the first point of contact for individuals and families seeking assistance from the Williams Syndrome Association. Your role is crucial in guiding them through the intake process, understanding their unique needs, and connecting them with the right resources. This is an opportunity to play a key role in enhancing the lives of those affected by Williams syndrome. If you, or someone you know, is passionate about making a positive impact and ensuring that every person with Williams syndrome receives the support they need, we invite you to apply. Please check out this link to review the job description and requirements or apply.
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Camp Blue Skies Williams Syndrome Week: March 6-10, 2024
Searching for social and recreational activities for an adult with Williams syndrome? Or, as a family member or friend, are you hoping to volunteer more with the WS community? Camp Blue Skies may have the perfect opportunities for both in March.
Camp Blue Skies: March 6 - 10, 2023
Ages 21 and older
Camp Twin Lakes in Rutledge, GA
A 5-day/4-night overnight camp for adults (21+) with Williams syndrome, Camp Blue Skies provides the opportunity to make friends, acquire new skills, and experience the traditional aspects of camp culture – field games, arts and crafts, fishing, canoeing, hiking, team building, along with music programming – in the safe and friendly environment of Camp Twin Lakes in Rutledge, GA, about 45 miles east of Atlanta. Please note: The days have shifted to Wednesday-Sunday.
Camper applications are open, with all forms due Feb. 1.
What can campers expect?
- Making friends. Adults with WS travel from around the country to attend. We offer a bus from the Atlanta airport on opening and closing days.
- Activities ranging from nature walks to the Giant Swing to improv.
- Picking up a new skill or hobby with an art class or visit the Camp Twin Lakes farm.
- Having a lot of fun.
- And, of course, enjoying music! Karaoke, check. Drum circle, check. Live music, check. A dance, check.
"Our programs allow campers to explore their creativity, learn new skills, and become more independent," says Dick Sesler, founder of Camp Blue Skies. "Campers get away from screens and get a chance to move their bodies, stimulate their minds, tickle their funny bones, and connect with others and nature."
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Camp is looking for Volunteers! The ideal ratio is one volunteer for every two campers. Training is provided, and smiles are guaranteed. Sign up for the full session, a few days, or a day! Got a question? Email Volunteer@CampBlueSkies.org. | |
Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our January 2024 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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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.
December-Only Meet-up
December Support Parents/Caregivers Meet-up
The end of the year and the holidays add their own unique spice to the normal stresses of life. While most of our FSN Groups take December off, we want to make sure there is an opportunity for parents and caregivers to come together to share stories, frustrations, successes, holiday tactics, or even spend a quiet hour with people who "get it."
This meet-up will be moderated by Joel Liestman (WSA Dir. of Family Support) and a few other volunteers. Breakout rooms can be made available for specific topics, if necessary.
New FSN Group Added - starts in January!
Adult Siblings of Individuals with WS:
New for 2024! We're launching an FSN Support Group for Adult Siblings of Individuals with WS. We recognize that siblings share the concerns and successes of their loved ones with Williams syndrome. This group will be a place where adult siblings can gather to share fears, frustrations, and ideas as they navigate this life-long, ever-changing journey. The first meeting will be on Sunday, January 21, at 8 PM ET via Zoom.
The group will be moderated by Varun Indugula, who lives in North Carolina with his family, including his brother Prannoy. Currently a student at UNC, his studies include neuroscience and developmental disorders.
Right now, this group is only for Adult Siblings (18+). We are in the process of creating a teen/child sibling group to be run by a professional sibling facilitator for kids.
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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The month is almost over, but there is still one more group meeting in December.
All groups meet 8-9 PM ET. Click on the group to register. You must register to attend.
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All groups meet 8-9 PM ET. Click on the group to register. You must register to attend. | |
Spotlight: Williams Wednesday Highlight | |
Lilly Egusquiza
Meet Lilly Egusquiza. At just 14 months old, Lilly is a bundle of joy with a heart as big as her smile.
Lilly is passionate about music, turning pages in books, and watching her big brother Leo bust a move on the dance floor! She also enjoys going to the beach with her trusty sidekick, Zeus, the puppy, by her side.
Lilly is embracing her journey with Physical, Occupational, and Feeding/Speech Therapy, taking her challenges with crawling/walking and eating head-on.
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She's also a people-watcher! Whether outdoors or in public spaces, Lilly thrives on observing the world around her. Her biggest fan and ally is her big brother Leo.
Leo is Lilly's role model, and she learns best while soaking in his playful energy and dance moves. Whenever Leo is around, Lilly finds her calm and loves playing with his collection of cars and trucks!
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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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Together We Give
We are so thankful to those of you who donated to the WSA on Giving Tuesday.
If you didn’t get to contribute, no worries! You can still make an impact. Before the end of the year, join in on our Annual Appeal. Give Now.
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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, January 6
Great Lakes Region Family Holiday Party
Shelby Township, Michigan
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Saturday, January 27
Dave & Buster's
Fun Day
West Nyack, New York
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Wednesday, March 6 - Sunday, March 10
Camp Blue Skies - Williams Syndrome Week
Rutledge, Georgia
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Thank You, Event Coordinators!
2023 Event Coordinators (mid-November until mid-December)
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Be sure to look for upcoming and local gatherings on our website on the events page! | |
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As we usher in an exciting period of growth, YOU are the key to our success! Our goal for 2024 and beyond is to focus on CONNECTIONS, RESOURCES, and RESEARCH. We need your help today! Your support will unlock the WSA's potential & and create a lasting impact.
Donate electronically or mail a check, payable to Williams Syndrome Association, to 243 Broadway, #9188, Newark, NJ 07104.
WSA is a 501(c)3 nonprofit organization, tax ID #22-3305007. Donations are tax-deductible as allowed by law.
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2024 WSA National Convention: Get Your Planner Ready
We can sense the excitement around our 2024 WSA Convention in Phoenix, Arizona! Here at the WSA, we share this same feeling and want to ensure you and your family are prepared for anything and everything surrounding next year's event.
There are many questions to answer, but we wanted to share a few we know you need to get started in your planning process.
What are the dates for convention?
Tuesday, July 9 - Saturday, July 13, 2024
Which hotel is hosting the convention?
The Hyatt Regency Phoenix - 122 N 2nd St., Phoenix, AZ 85004
When does the room block open for convention?
The hotel room block opens on January 10, 2024
How much are the rooms?
Rooms will be $125 per night for one king or two queen beds, up to four people per room. We originally booked the Hyatt back in 2015 for the 2020 convention, and they are honoring those rates. We'll never see room rates this low again, so be sure to join us if you can!
When will convention registration open?
Convention registration will open in March of 2024.
Are there scholarship opportunities for this convention?
Yes. The WSA offers need-based scholarship awards to both individuals and families at various levels to help offset convention expenses for educational sessions, programs, and travel. If you are interested, please use the link below to access our interest form:
Be on the lookout for future information to set you and your families up for success through our monthly newsletter, social media posts, WSA Convention Website. The website will be your main hub to learn all the latest and greatest related to convention.
As always, thank you for your ongoing support. Should you have any questions, please email us at convention@williams-syndrome.org.
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Junior High, High School & Beyond:
A Transition Checklist
Navigating life beyond the schooling years can be daunting and stressful. WSA Educational Consultant Michelle Self has created this handy outline to help! The information is presented in 2 ways: a straightforward outline and with graphics. You can choose whichever you prefer - the information is the same.
This information is meant to be a starting place to help you navigate and ask the tough questions and really think about the answers. Don’t overthink the process! You can always revise the plan, and the goals may not be reached in a straight path but with lots of detours along the way!
Michelle Self can be reached at mself@williams-syndrome.org with any questions.
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Did You know?
The WSA is compiling just some of the places where you can find Williams syndrome in films, TV, news, and other media. We'll keep adding to it from the archives and all the media to come. Keep checking back, and drop us a line if you see something we missed!
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Have you seen the new article featuring Tobi Akbas? | |
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We shared it on social media, we linked it on our WS in Media and Entertainment page, and we've seen it shared by countless others, but have YOU read it? Hayley Cuccinello, Senior Reporter at Business Insider, wrote the compelling, well-rounded piece featuring Tobi Akbas: The joy and sadness of loving strangers. Click here or on the image below to read it now.
We're super proud of Tobi for sharing his story so openly and honestly. Thank you to everyone who contributed to this story. (If you encounter a paywall, try pasting the link in "incognito" or "private" mode).
Catch the podcast next week to get a behind-the-scenes look with special guests Tobi and Hayley.
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WSA Podcast: The Starry-Eyed Effect
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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 24: Ottenheimer to the Rescue! with Scott Ottenheimer, Look...did I have a whole other episode planned and then couldn't get it scheduled and was bailed out by awesome Board member Scott Ottenheimer? Maybe, but we were always going to have Scott as a guest! As his time on the WSA Board of Trustees comes to a close, Scott talks to Brendan and Jen about his time serving the WSA and how it has set the organization up for the future! As a community, we are so lucky to have amazing people like him advocating for not only what he is passionate about but what is going to be best for our entire WS community.
Thank you, Scott, for your leadership!
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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Check out this cool opportunity for artists with Williams syndrome! Artists must be 18 years old or older. Please take a look at the information on the flyer for the details.
Questions? Contact Jan Beard at jbeard@williams-syndrome.org or (469) 595-9506.
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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 five research opportunities below. | |
Research Opportunity #1:
Language Learning in Williams Syndrome - Closes soon!
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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 #2:
Inclusive Education Survey (Maryland Residents) - Closes soon!
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We want to emphasize that this survey is open to individuals of all ages and is specific to residents of Maryland. It is crucial that people share this information with families, educators, and caregivers of individuals with intellectual and developmental disabilities (I/DD) in Maryland. Please participate and share!
For those with intellectual disabilities, the prospect of attending college after high school is often limited. The Center for Transition and Career Innovation (CTCI) at the University of Maryland College Park is reaching out to YOU—students, families, educators, and Maryland colleges/universities—to gather insights into your interest, knowledge, and desire for college programs catering to individuals with ID in Maryland. Importantly, we want to stress that no personal information will be collected from participants.
The information gathered will be used to advocate for the development of college programs for individuals with intellectual disabilities. We aim to compile general insights from the survey responses and present them to state legislators, apply for grants, and establish partnerships. This survey is a unique opportunity for your voice to be heard on a matter that directly impacts the educational opportunities for individuals with ID.
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Please take just 5 minutes to complete this survey. Your input is invaluable, and we sincerely appreciate your contribution to this important initiative. Thank you! | |
Research Opportunity #3:
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 #4:
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 #5:
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 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.
Purchase your WSA merch, including the 2023 holiday ornament, 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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