From the WSA ED, Dr. Mary
As the Executive Director of the Williams Syndrome Association, I wanted to take a moment to express my deep gratitude for each and every one of you. I am truly grateful for my role within this incredible community and for the opportunity to work alongside such dedicated individuals.
The mission of the WSA is of utmost importance, and this Thanksgiving, it holds even greater significance. The work we have accomplished together and the work we can continue to do in the future is truly remarkable. I am thankful for the unwavering commitment and passion that each member of this community brings to the table.
Your support, involvement, and dedication to improving the lives of individuals with Williams syndrome is truly inspiring. It is through your collective efforts that we are able to make a positive impact and create a brighter future for those affected by this condition.
This Thanksgiving, let us reflect on the progress we have made and the lives we have touched. Together, we have achieved so much, and I am filled with gratitude for the opportunity to be a part of this journey. As we look to 2024, we have so much more we want and need to accomplish, so let us continue to uplift, inspire, and create a supportive network that transcends the challenges we may face.
Thank you for your continued support, your unwavering dedication, and your belief in the mission of the Williams Syndrome Association. I am truly grateful for each and every one of you.
Wishing you all a joyful and blessed Thanksgiving.
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Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our December 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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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.
Word of our Family Support Network groups is getting out!
Lately, several college students from around the country have asked to attend our FSN groups to learn more about Williams syndrome and the unique challenges our families face. Undergraduate and graduate students have been attending (with the families’ permission, of course) as part of their Genetic Counseling studies to see how we, as an organization, set up, structure, and facilitate our groups. According to their feedback, they’ve been impressed that we emphasize the importance of creating a safe environment for individuals to feel vulnerable with each other. Our consistency with the meetings and getting professionals to moderate certain topics are also seen as big positives.
New December-Only Meet-ups Added!
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."
These meet-ups 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.
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 November!
All groups meet 8-9 PM ET. Click on the group to register. You must register to attend.
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December groups are taking a break, with the exception of Grief Support, and will resume in January.
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 | |
William Raschke
At just 18 years old, William is making dreams come true as the Station Steward with the Cascade Township Fire Department, Station 1 in Grand Rapids, MI!
William attends the Kent ISD Empower U Transition Program and proudly completed his studies at Rockford High School in May 2023.
Despite math and writing challenges, he's conquered them with determination.
Will is passionate about guitar, taking lessons with Jeremy Verwys at West Michigan Music Therapy. He's also a music lover, particularly rocking out to his favorite tunes and cheering for the Michigan State Spartans and all Detroit sports teams.
Learning cooking skills and spending quality time with his beloved cats, Ellie and Piper, are some of Will's favorite pastimes.
William overcame difficulties with reading thanks to a Wilson Reading System certified tutor. His resilience is truly inspiring.
His favorite time of the year is WSA Teen Camp Week, and he cherishes every moment.
Despite having open heart surgery at 18 months to repair SAS, Will is now thriving and has regular check-ups with a cardiologist every three years.
A heartfelt quote from Will: "Thank you so much to Chief Adam Magers and everyone at the Cascade Township Fire Department. I have wanted to work in the fire service for as long as I can remember, and I can't believe this dream has come true! I will do my best every day!"
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Joseph
Two Rivers High School featured the story on Joseph below, and we had to reshare it!
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Meet this week’s featured Two Rivers student, Joseph!
Joseph is a part of Two Rivers Jazz Band, and takes music lessons at Brighter Minds in Mendota Heights!
Joseph began drumming at five years old, he started by using the table to make beats with his hands and then received a three piece drum set as a gift! The first song he taught himself was We Will Rock You by Queen. Joseph explained his love for musicals and how he “Enjoys putting on his headphones and rocking out on his drum set”! Joseph’s favorite genres of music are Metal, Rock and Jazz (if he had to choose).
-Q&A-
Who do you think is the GOAT Drummer? Niel Pert from Rush
How does drumming make you feel?
“For me it is a stress reliever, I love to do it everyday and it makes me feel good! I love to get groovy!”
What do you want to be when you grow up?
“Professional drummer for musicals and in a professional band!”
Advice to future drummers - “If you want to be a successful drummer it takes a lot of practice to learn but if you keep practicing your skills only get better and better!” “Take responsibility and learn the right notes!”
Favorite Quote: “It needs more cowbell!”
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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
Giving Tuesday Is next week on November 28, 2023! Be sure to like and share our posts on our WSA social channels. Every little bit helps!
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Exciting News!
For the first time, the Williams Syndrome Association is taking part in the NFL's My Cause My Cleats initiative. Seattle Seahawks running back Zach Charbonnet has chosen the WSA for this campaign, driven by his personal connection to Williams syndrome through his sister, Bella.
Watch for Zach on the field in his custom WSA cleats during the Seattle Seahawks vs. Dallas Cowboys game on November 30, 2023.
Join the excitement by downloading our coloring sheet, and participate in spreading awareness.
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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, December 9
Quintessential Colonial Holiday Celebration
Uxbridge, Massachusetts
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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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Thank You, Event Coordinators!
Delighted to share the tremendous success of the recent events, which have brought the community together and raised awareness. A heartfelt shout-out to our phenomenal coordinators – their dedication made all of this possible!
2023 Event Coordinators (mid-October until mid-November)
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Elana
Bat Mitzvah Project
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Team Netrality and Rob Del'Unto
Philadelphia Half Marathon
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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! | |
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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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John’s Crazy Socks will again hold its 12 Days of Giving Campaign during the first 12 days of December. For each order a customer places during the first 12 days of December, John’s Crazy Socks will donate $1 to a charity partner of your choice! At checkout, select the Williams Syndrome Association. John’s Crazy Socks will also present a bonus donation of $5,000 to the charity partner that receives the most “votes” from customers.
John’s Crazy Socks is on a mission to spread happiness and John says that the keys to happiness are “do for others and gratitude.” Their 12 Days of Giving is one way they spread happiness.
Tell all your friends! All socks are eligible! They have Williams Syndrome Awareness socks too!
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Building Excellence: 2024 WSA National Convention Planning
The preparations for our 2024 WSA National Convention are in full swing. To ensure an unforgettable experience for all attendees, multiple subcommittees are hard at work. Comprising 30 devoted volunteers, these committees focus on crucial areas vital to the success of our convention. These areas include:
- Various age-appropriate programs
- Welcoming attendees (including first-time convention goers and newly diagnosed individuals/families)
- Entertainment / Exhibits
- Fundraising
- Volunteers
- Diversity, Equity, and Inclusion
- Sibling Outreach
As any convention goes, success lies in the collaboration of the many people who work to create exceptional experiences for all in attendance. Funding is a crucial component in bringing this vision to life. If you know anyone who may be interested in donating to the fundraising/sponsor efforts of the 2024 WSA National Convention, please email Jennifer Chaplin at jchaplin@williams-syndrome.org.
On behalf of the volunteers and team members at the WSA, we look forward to serving you and your families on a continued basis. Thank you for your ongoing support.
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Did You know?
The WSA Website Translates into Your Preferred Language! Simply check the footer on any page for seamless language conversion.
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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 22: 'Zona talk with Nick and Lindsey, Brendan joins from Austin, TX, where he just wrapped a weekend of working with the WSA Board of Trustees. What is that like? Well, he tells us. Then Jen and Brendan talk to Lindsey and Nick about planning the 2024 WSA National Convention in Phoenix, AZ! Look out for Haboobs!!
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: 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 #2: 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 #3:
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 #4:
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 #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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