From the WSA VP, Sarah
It’s an exciting time of year! May means Williams Syndrome Awareness month, Mother’s Day, graduations, wrapping up the school year, Memorial Day ringing in the unofficial beginning of summer, getting ready for summer camp, and our 2024 National Convention being right around the corner! This year, it also means our first ever Weekend for Williams!
The programs & services the WSA provides require millions of dollars to execute - so where does the money come from? The WSA is funded solely through private donations from incredible people like you! Being labeled an "orphan disorder" creates a stark reality - no financial incentive for pharmaceutical or profit-driven companies to support us, private funding opportunities are limited, and government funding is not an option.
This year, we’re turning awareness into action! We’re launching our Weekend for Williams event on May 31 & June 1, 2024. This event employs the "Giving Day" model, a time-sensitive online fundraising strategy with a 24-hour window of 6pm MT May 31 - 6pm MT June 1. Our goal is to raise $250,000 and we need YOUR help!
A "Weekend for Williams" is more than just a fundraising event; it's an opportunity for all of us to come together and make a collective impact. Your contribution, no matter the size, plays a crucial role in supporting individuals with Williams syndrome and advancing research and awareness initiatives.
In this newsletter, throughout this next week, and live next weekend, we’ll tell you how you can help us reach our goal of turning awareness into action!
We can’t thank you enough for your support. It truly takes a village - and we're grateful you're part of ours.
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"Weekend for Williams" is more than just a fundraising event; it's an opportunity for all of us to come together and make a collective impact. Your contribution, no matter the size, plays a crucial role in supporting individuals with Williams syndrome and advancing research and awareness initiatives.
Here is our key to success: We need 500 people to raise $500 – which can be done by finding 24 people to donate $24 in 24 hours!
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Here’s how you can make a difference!
GIVE!
Personally donate to Weekend for Williams a few ways.
GET!
Create a WSA Weekend for Williams Fundraising page at weekendforwilliams.org. Creating your own page will also create your own text-to-give code.
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Share your fundraiser, or weekendforwilliams.org with EVERYONE YOU KNOW! Tell your personal story… share the impact the WSA has had in your life.
- Share our social posts. You don’t even have to write your own. Just share our Weekend for Williams posts, and invite people to join us on Facebook live May 31 & June 1.
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Post on social media! Make it easy to give by creating your own fundraising page, or ask them to text WEEKEND to 71777.
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Text everyone you know! Include a cute pic of yourself and your loved one with WS, include why the WSA matters to you, and ask them to text WEEKEND to 71777 to donate.
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Need more tips? Follow this tool to raise $500 in 24 hours!
JOIN US!
Watch your emails and join us live on Facebook during Weekend for Williams on May 31 & June 1 for opportunities to double your donation during Power Hours, hear incredible stories, and have a chance to win fun prizes.
The success of Weekend for Williams event relies on the collective effort of our community. Let's make this 24-hour period a remarkable and impactful experience, showcasing our shared dedication to advancing the mission of the Williams Syndrome Association.
PS - You don't have to wait until next weekend! Start your fundraising today!
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The 2024 WSA National Convention is right around the corner!
Have you registered?
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2024 WSA National Convention Updates
That’s right - the convention is in approximately 48 days, and things are heating up! Final preparation is in swing, and we have more important information for you and your families as you prepare for your trip.
REGISTRATION DEADLINES
On Friday, May 31, 2024, registration will close for programs for individuals w/WS (and siblings under 18). This date also marks the end of General Registration. Anyone who registers in June will be charged late registration pricing. Don’t miss out on a great opportunity for everyone and register today!
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Phase 2 of convention registration will launch the second week of June! Be on the lookout for additional emails providing you with more details on how you can download the app, register for educational sessions and roundtable discussions, and learn more about what the individuals with WS and their siblings will be doing during the week. | |
| Registration closes for all Individuals w/ WS and Siblings under 18 Programs | May 31, 2024 | | General Registration Ends | May 31, 2024 | | Last day to reserve a room in Hyatt Regency room block | June 17, 2024 | | Late Registration Ends - Final day to register for the convention | June 30, 2024 | | Deadline for Convention Add-Ons | June 30, 2024 | | |
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EVENING ENTERTAINMENT
Once you’ve arrived at convention, there are many ways for you and your family to be involved! Read below to learn about some of the hot ticket items on deck for Phoenix.
Exhibitor Night
Join the WSA community, physicians, educators, and other specialists at the Hyatt Regency for our Exhibitor Night on Wednesday, July 10. Spend time with vendors and speakers to learn more about how you can participate with the WSA to create promising futures for individuals with WS.
WSA’s Got Talent Karaoke
We know our community is filled with exceptional talent! On Wednesday, Thursday, and Friday nights, we will host our version of WSA’s Got Talent - Karaoke Version to showcase all of YOU! Bust out your best rendition of Taylor Swift (or whatever song you choose) - whatever you decide - just be prepared to - BRING IT! More information will be available onsite at convention.
Arizona Diamondbacks vs. Atlanta Braves Game
Hit a home run with your family and secure your free tickets for Thursday night’s (July 11) baseball game at Chase Field against the Atlanta Braves. The Arizona Diamondbacks graciously donated 1,200 tickets to our event. Each family can reserve up to 6 tickets through convention registration. Tickets are first come, first served, so be sure to grab yours today and secure your seats.
NOTE: Ticket does not include transportation, parking, or food. Additional tickets may be available onsite at the convention.
Saturday Night Closing Dance -The Mane Event
Get ready for a hair-raising good time! Join the party with your best wig, crazy hat, funky, or fabulous hairstyle. Let’s get ready to ROCK N’ ROLL! Make some memories and have a hil-hairious night! Secure your tickets today during registration on the Convention Add-Ons page. Tickets are $10 per person. Don’t wait - there are a limited number of spots available! Already registered? Simply modify your registration today and join in the fun!
Enter to win a “Glam Session” before the “Mane Event”
Enter to win a glam experience where three lucky winners will receive an afternoon out in preparation for the “Mane Event” on Saturday night, July 13, compliments of our Premier Sponsor, Innersense Hair Care. Raffle winners (along with one parent/caregiver) will be transported in style to a local Innersense partner salon. Upon arrival, they will be treated to snacks, pampering, and prepping for the dance. Be on the lookout for more information as we get closer to the main event AND the MANE EVENT. Official rules and cost of entry to follow.
NOTE: At this time, the Opening Night Fiesta (Tuesday, July 9) and Glow BINGO! (Friday, July 12) are currently SOLD OUT. Didn't get a ticket? Be sure to check on site, as availability for both events may change.
Want to learn more about Convention? Visit the links below to gain important information and prepare for a fantastic week. We can’t wait to see you all there!
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Thank you to our Convention Sponsors! | |
PREMIER SPONSOR
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 that 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).
To personify the essence of Convention 2024 our Premier Sponsor, 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.
In support of Williams Syndrome Awareness Month, Innersense will donate 50% of each purchase of “Morgan’s Faves Set” to the WSA, so order your Innersense products today!
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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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: July 28 - August 1, 2024
- 12-year-olds can join us for an extra day to learn about teen camp!
Teen Camp Experience: 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 June 2024 Zooms!
You can join us for the Tuesday Shenanigans June 18 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo June 20 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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Family Support Network Special Q&A Event for parents and caregivers of an only child with WS!
Next Wednesday, May 29th, in the Only Child FSN Group, we have special guest Meredith Greene! She is a partner at the law firm, Day Pitney, where she practices special needs planning in the Boston office. Meredith is counsel to families and individuals for estate planning, with a primary focus on special needs planning, estate planning, guardianship & alternatives, conservatorship, adult services advocacy, and government benefits advocacy. Meredith is a regular presenter at Williams Syndrome Association conferences and the national convention and currently serves as Treasurer on the WSA Board of Trustees.
This Q&A is exclusively for families of Only Children with WS to address questions regarding our unique situation of how to care for our kiddos after we're gone when there aren't siblings in the mix.
Be sure to catch Meredith speaking on these topics for everyone at the WSA Convention in July!
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All groups meet 8-9 PM ET. Click on the image to register. You must register to attend. | |
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-April until mid-May)
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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 a new episode dropped last week!
This week, in Episode 35: Awarenessing with Clare Neal and Micah Wilgus
We're well into Williams Syndrome Awareness Month, and Jen and Brendan are joined by Clare Neal, whose niece spearheaded a fundraising effort with her dance troupe.
After that, they're joined by Micah Wilgus, who is celebrating his 10th year of work at @McDonalds and is a tremendous advocate for Williams syndrome.
Producer Joel also gives an update on his son Bennett's Chili Pepper Fundraiser which happened live on Facebook this past weekend!
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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