From the WSA ED, Dr. Mary
Walk for Williams 2024 -
Making Strides Together
Dear WSA Members,
We are excited to kick off the annual Walk for Williams program, a premier awareness and fundraising event for Williams syndrome in the United States. For over a decade, this community-driven initiative has brought together thousands of participants from coast to coast, fostering connections and supporting the Williams syndrome community.
Join a Walk for Williams TODAY: Making an Impact Together
By participating in Walk for Williams, you can connect with individuals and families while contributing essential funds for the WSA's 14,000 members (and counting). Your involvement helps us provide vital resources such as support and educational materials, local and national connections, enrichment programming, advocacy efforts, and research advancements.
How to Get Involved: A Call to Action
Exclusive Perks for Fundraisers in 2024
This year, we're introducing a special incentive for all fundraisers who raise $150 or more – a free Awareness T-shirt! This unique shirt will be shipped directly to you as a token of appreciation for your dedicated efforts. Click here to find out more about this exciting new perk.
The Prestigious Role of Walk Chair: Lead the Change
We are looking for passionate and dedicated individuals to take on the prestigious role of Walk Chair for our Walk for Williams program. As a Walk Chair, you become a key leader responsible for coordinating all aspects of the event, including sponsorships, budgeting, volunteer coordination, action plans, and outreach efforts.
By stepping into this crucial leadership position, you not only drive positive change but also become part of a community of like-minded individuals with exclusive perks and swag. Are you ready to make a lasting impact? Fill out our interest form to learn more about becoming a Walk Chair.
Changes to T-shirt Distribution: Going Green for a Greater Cause
In 2024, we are making changes to our annual awareness T-shirts. Due to increased costs and considerations for environmental impact, T-shirts will no longer be distributed at the walks, reducing logistical challenges and waste.
You can obtain your annual awareness T-shirt in a few ways:
WSA Team Support: Here for You
Throughout this process, the WSA Team can answer any questions, offer guidance, and support you in hosting a successful event. Contact us if you have any inquiries or need assistance. Let's make Walk for Williams 2024 a remarkable success together!
Thank you for your continued support.
Sincerely,
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Whispering Trails Summer Camp Programs!
Applications to work at camp are now open! We’re seeking enthusiastic individuals for the following positions: licensed therapists, activity facilitators, music facilitators, senior counselors, teen camp counselors, therapy camp counselors, counselors in training, and jr. counselors. To learn more or to submit your application, visit williams-syndrome.org/camps.
And don’t worry – camper applications go live in late March!
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 28th - August 2024
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Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our March 2024 Zooms!
You can join us for the Tuesday Shenanigans, March 19 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo, March 21 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 Norweigan Aqua!
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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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All groups meet 8-9 PM ET. Click on the image to register. You must register to attend. | |
Lead the Way for Williams Syndrome Advocacy!
Are you ready to make a lasting impact? We are looking for passionate and dedicated individuals to step into the prestigious role of Walk Chair for our Walk for Williams program. This most crucial leadership position drives change and supports the Williams syndrome community. By becoming a Walk Chair, you will be joining a community of like-minded individuals who share your passion and have access to exclusive perks and swag!
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Upcoming Events - Highlights
Check out the highlighted events below. More events and local gatherings are on our website's events page!
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Rare Disease Day is a global initiative to raise awareness and generate support for everyone on a rare medical journey. It takes place on the last day of February, which this year is February 29th, the rarest day of the year.
Rare Disease Day unites people across thousands of rare conditions and aims to reach a broader audience.
Why do rare diseases deserve action and attention?
"I would suggest that being rare is an opportunity, not a weakness."
- Arran Strong, Surfer, Lovexair Ambassador and advocate for people who have Alpha 1 Antitrypsin Deficiency
"In a world of differences and inequality, realizing our privileges when we have good health is important. Empathy for those born at a disadvantage means we should help them receive the care and support they need to progress in the best way possible. Getting access to appropriate care or treatment is extremely difficult for the majority of people in the world. If we all realize these issues and can support a caring society, we should be able to change systems and policies and help those most in need. This is a basic human right. To achieve this, we must work together."
- Shane Fitch, President of Lovexair, an advocacy organization for people with respiratory diseases
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Click the button to go to the RDD events page.
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Check out the highlighted event submitted by the WS Clinic at Mass General below. Click on the image to learn more. The MGH online event is free to all families who want to register. Dr. Barbara Pober was on the planning committee and will help moderate the panels. The presentations aren’t necessarily geared to individuals who already have a diagnosis, it’s great for those who want an update on the current and future genetic landscape. Click on the image to learn more! | |
Thank You, Event Coordinators!
2024 Event Coordinators (mid-January until mid-February)
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Be sure to look for upcoming and local gatherings on our website on the events page! | |
2024 WSA National Convention
Welcome to your February Convention Update!
There are a lot of things happening as we continue to bring the 2024 WSA National Convention to life. Read below for a couple of planning updates and ways you can get involved.
Registration to Launch in Late March
Be on the lookout for an announcement of our convention registration launch in late March. We are excited to offer a variety of sessions on education, medical, community issues, and resources. There will also be networking opportunities, specialized programming for individuals with Williams syndrome, and much more. Engage with our monthly newsletter, social media posts, and WSA Convention Website for more information and updates.
New Overflow Hotel Added for Convention!
We continue to be blown away by the overwhelming response to our 2024 WSA National Convention Room Block. Thank you all for your interest and engagement over the past few months. We have secured a third hotel with low-cost rates for our attendees to book. This brings our total to four hotel options for convention:
Reminder - Due to a higher-than-anticipated interest in the 2024 WSA National Convention, most of our room block at the Hyatt Regency Phoenix is currently sold out. Additionally, the entire hotel is nearly sold out on Friday, July 12, so we cannot add more rooms to our block. As we get closer to convention we anticipate some cancellations, which will open up room availability.
For the most current details on our convention room blocks, visit our website's Room Block Update page.
Be an Exhibitor
Convention is the perfect place to publicize books, software, classroom aids, educational opportunities, products, or services. Individuals with Williams syndrome are also welcome to share their businesses! If you or someone you know is interested in being an exhibitor at convention this summer, check out our Convention Exhibitor Information page.
Be a Volunteer
Do you have family or friends in the Phoenix area who are passionate about volunteering? As the heart (and the hands) of the convention, we are looking for approximately 150 energetic and excited individuals to join us each day for our 2024 WSA National Convention. These individuals will be key to ensuring safety and efficiency in the following areas:
- Childcare - Infant, Toddler Programs
- School-Age Program
- Teen and Adult Companions
- General
Visit our Convention Volunteer page for the following information:
We will continue to share convention updates and information for you and your families each month. Be sure to follow our monthly newsletter, social media posts, and our WSA Convention Website.
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Because “people give to people,” we’re reaching out to our members in the Southwest to ask for your assistance. Do you know of a corporation, small business, community organization, or philanthropic individual who might be interested in making a meaningful impact by becoming a Convention Sponsor/Underwriter? Opportunities are available, ranging from $1,500 to $20,000.
The WSA staff and a small-but-mighty committee of volunteers are ready, willing, and able to make the asks – we just need your help in identifying the right contacts!
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Please contact Director of Development Ann Marie Sanders at givewsa@williams-syndrome.org or 248.509.0697 to share contact information of any potential Sponsors.
We sincerely thank you for your assistance and look forward to seeing you in Phoenix!
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The WSA's podcast, The Starry-Eyed Effect, delivers new episodes every other Tuesday, and a new episode dropped this week!
This week, in Episode 29: Prepping for College with Pascale and Gerald Momplaisir, It's the last show of Year One of The Starry-Eyed Pod!
Jen and Brendan are joined by Gerald and Pascale Momplaisir from Baltimore, MD. This Dad and Daughter Duo shares the excitement and opportunities of preparing for life after high school and getting ready for college. Pascale also gives us some insight into the particular challenges of being a young woman of color with a disability while Gerald (and his wife, Tara) navigate being parents trying to protect and do what's best for her and their other kids.
Got a question for the 1st Anniversary Show? Comment on the video or email us at podcast@williams-syndrome.org!
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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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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