From the WSA ED, Dr. Mary

It is hard to believe that this July marked one year as your Executive Director of the Williams Syndrome Association. During the past year, I have met with members, stakeholders, researchers, and medical professionals. After a year of listening and learning, it is clear there is excitement about where we are and where we want to go. There is a pent-up demand to be involved and active within the WSA, and our organization's potential power has become incredibly apparent to me. 

Over the past year, we have been developing the infrastructure to harness this power and position ourselves to create long-term sustainable impacts in our future. Most recently, we have been on a strategic journey to create more definition and consistency in how we describe what we do at the WSA and in what way we can best service the Williams syndrome community. At its core, the WSA focuses on providing three core things to our community; Connections, Resources, and Research. You will see us use this description a good deal moving forward, as it is our hope that it is a simple construct for the press, medical institutions, and our community to understand what our focus is as we continue to operate as a respected institution in the world of rare diseases. Included below are a few selected highlights of a busy but productive year…

CONNECTIONS

1. Grew membership by 7.1%
2. Held 52+ hours of family support meetings & added 2 new support groups
3. Partnered with volunteers to facilitate 23+ awareness events & 50+ fundraisers

RESOURCES

1. Created a monthly newsletter
2. Provided 50+ hours of virtual programming to members 
3. Supported 15k+ requests for information and assistance

RESEARCH 

1. Grew partnerships by 250% 
2. Added two new WS clinics to the WSA Clinical Consortium 
3. Funded $500k+ in research, including the WSA Early Investigator Award Program

In just under 12 months, the WSA looks a little different than we did yesterday, and in another 12 months, we will look a little different than we do today. We are evolving and growing to meet the community demands, and our new systems will allow us to operate differently and better than we do today, but the heart of what we do will remain the same. At this one-year mark, I want to extend a huge and heartfelt thank you to the Board of Trustees, the Family Support Network, the WSA team, and countless volunteers and advocates that have made this past year's growth possible. I am incredibly proud to serve as your Executive Director, and I, along with my team, am honored to represent the thousands of individuals and families with Williams syndrome across the US. I remain confident and excited about what the future holds for this wonderful organization.

Honoring Dr. Mary's 1st Anniversary with the WSA

"We appreciate all the long hours, travel days, and continued research you and your team have put in over this past year." Ashley Bennett-Sigmund, WSA Member and Volunteer

"I've been so impressed by Mary's dedication and passion in her year 1 with the WSA. She hit the ground running, putting in place so many key foundational elements that I know will set us up for a fantastic year 2 of increased awareness and impact for the WSA under her leadership." Rebekah Pagis, WSA Board of Trustees

"It is a joy to have you lead the WSA and I can't wait to see what you and our community will do together in the years to come!" Matt Bartow, WSA Board of Trustees Secretary

Small Change Makes a Big Impact

Two weeks ago we celebrated a milestone in the WS community - 7q.11.23 - a date that comes around once a century! This is the numerical sequence that corresponds to the area of deletion of the #7 chromosome that signifies Williams syndrome.

We appreciate all who participated in the celebration on social media and with your loved ones!

We will get to celebrate the day again on November 7, 2023, since European countries format their dates with the day first and the month second! Check out the hand-drawn gene stickers designed by Dr. Jocelyn Krebs, available for purchase through Outshine Labels.

WSA Podcast: The Starry-Eyed Effect

The WSA's podcast, The Starry-Eyed Effect delivers new episodes every other Tuesday and today a new episode dropped!

Have you read the article on the young woman from Oregon with Williams syndrome who competed in Dressage in France at the Virtus Global Games? Oh you have? That's great - because this week, Jen and Brendan interview Maddie Woo and her dad, Aaron, about her experience and everything she overcame to make that dream happen. Then Producer Joel steps in for Jen (who is very busy) to interview Cassandra Davide and Kim Scheier, team teachers from New York who share their experience running an inclusive classroom that included a student with Williams syndrome.

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

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 August 2023 Zooms!

You can use the link below that matches the date you'd like to attend to register for the Zoom.

August Zoom Meetings

You can join us for the Tuesday Shenanigans, August 22 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo, August 24 at 7pm ET/ 6pm CT/ 5pm MT/ 4pm PT.

To register click on the link below for the day you want to attend.

August 22, 4pm ET: Adventure Seekers - Register here



August 24, 7pm ET: Adventure Seekers - Register here

Upcoming Events - Highlights

Check out the highlighted events below - you can find more events at our website on the events page!

Want to host a Fall Awareness Event? Learn more here.

How to raise awareness and funds if you don't have a walk near you. Find out more here.

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.

New Partnership with Speech-Language Pathologist Consultant

Greetings families! It is an honor and a pleasure to introduce myself to you.

My name is Bianca Corozzo, and I am a Speech-Language Pathologist located in the New York City area. I’m excited to announce that I will be working as a consultant with the WSA! My relationship with the Williams syndrome community began in 2018, when a dear friend of mine asked if I could work with her son as his speech therapist. I told her I’d be honored to help this absolutely amazing young man, who possesses so many wonderful gifts. It instantly became my personal and professional goal to help him expand his communication skills so he can share these gifts with the world. Thus our journey began. I have been Anthony’s speech therapist for the past five years, and it has been one of the highlights of my career. I have been blessed to see the progression from basic conversation, to hearing, “So Miss BB (his name for me), what are you going to do after you finish working with me?” And I see this as only the beginning! This is a true testament to how supportive and encouraging families, along with a skilled team of professionals, and the guidance of the WSA, can help children with Williams syndrome realize their potential! In addition to consulting with WSA, I serve on the benefit committee for the Anthony Filippazzo Grant for Williams Syndrome Research, and I was an attendee at, “Coming Together Around Williams Syndrome Symposium” in May 2022. It was there I realized how few professionals there are with knowledge of and experience with the Williams syndrome community, and it only strengthened my commitment to Anthony’s progress and the WSA.

I am excited to join the WSA as a consultant, where I will be providing a variety of support for families. For those who would like to connect individually, you can book a virtual session with me to discuss anything communication-related. I can review your child’s current therapy goals and treatment plan, make suggestions for home-based activities, and refer to the appropriate professional where necessary. In addition, I will be conducting regular webinars on topics of interest to families, as well as monthly group meetings where I can address your speech, language, and feeding concerns. I look forward to meeting all of you and helping you give your children the voice they deserve to have in this world! Please feel free to reach out to me at bcorozzo@williams-syndrome.org or click on the button below to schedule a session.

To learn more about the consultant partnerships we offer visit https://www.williams-syndrome.org/consultants-and-partners.

The WSA partners with LanguageLine Solutions

Over the next four decades, the foreign-born population in the US will nearly double. Nearly half of these individuals will be limited English proficient (LEP) speakers.

To serve the entirety of our community, the WSA has partnered with LanguageLine Solutions to provide on-demand translation services. And our On-Demand Interpretation services connect you to 20,000+ professionally trained audio and video interpreters fluent in more than 240 languages, including American Sign Language and British Sign Language.

A BONUS Listen & Learn: "Sold a Story" meets Williams Syndrome

BUT WAIT! THERE'S MORE!

You may have seen recent headlines that mention things like "Science of Reading," "Balanced Literacy," "Reading Wars," and "Sold A Story." These headlines refer 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. Recently, 2 bonus episodes have been released.

Please join Dr. Carolyn Mervis, WSA Education Consultant Robin Pegg, & WSA ED Dr. Mary Van Haneghan as we listen to the bonus episodes of the "Sold A Story" podcast and discuss what this means for literacy and learning for individuals with Williams syndrome.

Catch up on the original six sessions and listento the bonus session at:

williams-syndrome.org/listen-and-learn

WSA Research Partnership with the University of Wisconsin Milwaukee

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 visit the following link: https://sites.uwm.edu/bklein/williams-syndrome-studies-open-to-enrollment/

We are also supporting a Community-Based Participatory Research project with Black Families of Children with Williams Syndrome that was initiated based on Brianna’s interests in improving the experiences of Black families of children with Williams syndrome.

We are grateful to Brianna Young, Bonnie Klein-Tasman, and the UWM Child Neurodevelopment Lab for their commitment to improving the lives of children with Williams syndrome. We are also grateful to the WSA members Tara and Gerald Momplaisir, who are making this research possible through their generous donations.

There's still time to register for these virtual listening sessions! This study is aimed at bringing more understanding to how we can improve healthcare experiences for black children with Williams syndrome.

Register today!

Session 1 on July 26th register here.

Session 2 on August 29th register here.