From the WSA ED, Dr. Mary
Happy March! I wanted to share a few exciting updates as our team wraps up 2022 and the first quarter of 2023.
When I joined the Williams Syndrome Association as the Executive Director in August of 2022, the WSA was projecting a significant financial loss for the year due to various factors related to the ongoing pandemic, inflation, and the leadership transition. Due to hard work, conservative spending, and, most importantly, our supportive and generous membership, we could close out the 2022 fiscal year breaking even! A big accomplishment!
Part of what makes ending 2022 an incredible accomplishment was some of the enhancements I identified to serve you, our members, in a meaningful, equitable, and sustainable way. One facet of these enhancements was implementing internal operational efficiencies allowing the staff to operate entirely remotely. We instituted technology updates and new platforms to enable us to compete and align with current best practices. The other crucial enhancement was completing an organizational restructure to meet the community's changing needs. Implementing a leadership team and a three-armed structure of Programs, Development, and Clinical & Research Support helps create clarity and focus as we continue our transition this year. Also, during this restructuring, we brought the organization back to its pre-pandemic staffing levels. In 2020, the WSA had nine staff members, which included a development director. In 2021 & 2022, we dropped to eight employees and are now back to nine with the development role reinstated.
All of these items point to the true resiliency of our organization. One thing that amazes me about our community is the ongoing commitment to our mission, no matter what. It is like nothing I have seen before. I applaud each of you and feel honored to have the privilege of serving as your Executive Director.
For 2023, we will continue to focus on the 3 C’s: Connection, Communication, and Collaboration. We have so many exciting things in store. Just a few teasers for what we have planned: a monthly newsletter, the upcoming release of our 2022 annual and donor impact reports, a new language support line, increased scholarship opportunities, expanded awareness efforts, family camp, new Williams Syndrome Clinics, and new & enhanced partnerships with organizations such as NPPACT, NORD, Think College, The Arc, Special Needs Alliance, Creative Spirit, and Camp Twin Lakes.
I am eager to continue expanding our partnerships with members, stakeholders, the Board, and staff to realize our vision that all individuals with Williams syndrome have the support they need throughout their lifespan to live healthy, self-directed, productive, and meaningful lives.
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New * New * New * New * New * New
We're excited to announce that the Williams Syndrome Association has a PODCAST! On each episode of The Starry-Eyed Effect, hosts Jennifer Keeton and Stephanie Caron have real conversations with people with WS about the ups and downs of living with a rare genetic condition. They also talk to advocates, professionals, and caregivers who dedicate their time and energy to making the world a better place for the community we love.
Episodes 1 and 2 are out now, and new episodes are released every other Tuesday.
The Starry-Eyed Effect is available on 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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Partner Spotlight: Innersense Organic Beauty
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.
Expanding on its already extensive support of the WSA, Innersense is also building a partnership with the WSA through its invitation-only affiliate program! Click here or on the image below to start shopping while supporting the WSA.
The positive impact of the Starkman Family (pictured above) who founded and runs Innersense Organic Beauty is profound in our community and beyond. Read the Innersense Impact Report.
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.
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Listen & Learn: "Sold a Story" meets Williams Syndrome
You may have seen recent headlines that mention things like "Science of Reading", "Balanced Literacy", "Reading Wars", and "Sold A Story". These headlines are referring to recent debates on what is the "right" way to teach reading and a polarizing podcast called "Sold A Story" by Emily Hanford. The podcast tells the story of reading instruction in America and outlines the impact that trends in reading instruction have had on literacy rates in America.
Please join Dr. Carolyn Mervis, WSA Education Consultant Robin Pegg, & WSA ED Dr. Mary Van Haneghan as we listen to each of the episodes of the "Sold A Story" podcast and discuss what this means for literacy and learning for individuals with Williams syndrome.
Join us for this important six 90-minute session series.
8:00 – 9:30 pm ET
Session 1: Watch Recording
Session 2: Watch Recording
Session 3: Watch Recording
Session 4: Monday, March 27
Session 5: Monday, April 10
Session 6: Monday, April 24
Zoom Registration link: wsinfo.org/reading2023
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Family Support Network Groups | | |
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Are you looking for ways to connect with other parents/caregivers? Our support groups gather monthly virtually to discuss experiences, share thoughts, and offer support: private "peer-to-peer" groups. Periodically, a medical advisor specializing in the topic may join the discussion.
The topic-specific groups offer a great way to meet with parents/caregivers going through similar experiences. If you haven't had a chance to join, we welcome you to try a group.
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New Groups Added! Learn more about the two new groups added:
WS Grandparent Family Support Group
We know that it takes a team of people to care for a child or adult with Williams syndrome (WS), and grandparents often play a vital role. The WS Grandparent Family Support Group is a place where grandparents can share ideas and experiences, and offer support in navigating the complex family dynamics involved in raising someone with Williams syndrome. The group will be facilitated by Julie Oglesbee, the grandmother of a wonderful young man with WS and an active volunteer raising awareness in her community.
Parents/Caregivers of Only Children with WS
When your only child has Williams syndrome, one of the biggest fears is wondering who will be there for your child after you’re gone. If you are a person with Williams syndrome, life after the stable care of your family can seem daunting and overwhelming. The Only Child Family Support Group will meet monthly to discuss strategies, support anxieties, and share ideas about how to create a community of support that is trustworthy and steadfast. The group facilitators are WSA Director of Family Support Joel Liestman and WSA Board of Trustee member Bill Palmer, who each have an only child with Williams syndrome.
The dates for March and April Groups are listed below and on the WSA Website. For those planners, May group dates are not linked below but are already on the events page of the WSA Website.
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All groups meet 8-9 PM ET. Click on a group to register. You must register to attend. | |
All groups meet 8-9 PM ET. Click on a group to register. You must register to attend. | |
Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our March and April 2023 Zooms!
NEW! This year, you'll use the link below that corresponds with the date you'd like to attend to register for the Zoom. You'll register to receive the links every month.
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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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Important Orlando Room Block Update
Anxiously waiting for an update on our room block situation for the Adventure Seekers trip to Orlando from September 28 - October 1, 2023?! You can find out more by clicking the button below.
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Missed the Orlando 2023 Info Session? No worries! You can watch it to learn more about the trip. |
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WSA Office Holiday Closures
The WSA Office will be closed on the following days in March and April:
- Friday, March 17th
- Friday, April 7th
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Shop WSA
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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Have you heard? You could be the lucky winner of a Disney Dream Trip of a Lifetime while supporting the life-changing work of the WSA.
From now through April 30, 2023, we are running a sweepstakes for a chance to win a $10,000 prize to put towards a Disney dream vacation.
All funds raised will be used for individuals with Williams syndrome, including specialized programming and scholarships.
Every $100 entry gives you a chance to win an unforgettable trip to a Disney destination of your choice. A registered Disney travel agent will handle the winner’s arrangements. No purchase is necessary. See official rules for more information.
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Please consider sharing this event with your friends and family. WSA membership is not required to win. Entries are open to anyone in the US. Click the "Start Sharing" button for promotional materials with content and language to make it as easy as a few clicks to share.
Together, let’s change lives and make your Disney Dreams come true!
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Upcoming Events - Highlights
Check out the highlighted events below - you can find more events at our website on the events page!
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This Saturday, March 18th!
Show & shine, raffle, food, vendors, music, all in memory of Spencer Hughes.
Come join the fun, show support and donate to a good cause.
In Memory of Spencer Hughes - Lake Lou Car & Truck Show
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WS Summer Camps
SAVE THE DATE!
Whispering Trails Therapeutic Camp Experience:
July 30-August 3, 2023
(Ages 6-12)
Whispering Trails Teen Camp Experience:
July 30-August 4, 2023
(Ages 13-20)
Look for Registration in April
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WSA Cypress Awareness Walk
Cypress TX
April 15, 2023
REGISTER BY MARCH 18TH TO RECEIVE A T-SHIRT
Awareness, meet & greet,
walk, face painting, raffle, prizes, lunch and much more!
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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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