From the WSA ED, Dr. Mary

This month, I wanted to touch on the three main pillars that the Williams Syndrome Association focuses on: Connections, Resources, and Research. 

At the heart of the Williams Syndrome Association lies the power of connections. We believe in building a strong and supportive community for individuals with Williams syndrome, their families, caregivers, and friends. Through various events, programs, and online platforms, we create opportunities for everyone to come together, share their experiences, and celebrate the joys of being part of this extraordinary community. The bonds we form here are unlike any other, and they remind us that we are never alone on this journey.

Knowledge is power, and that's why the Williams Syndrome Association is committed to providing a wealth of resources to families and professionals. From educational materials to practical tools, we strive to equip everyone with the information and support they need to help individuals with Williams syndrome thrive in all aspects of life. Our goal is to empower each member of the Williams syndrome community with the resources they need to live fulfilling lives.



Advancing knowledge and understanding of Williams syndrome is a crucial part of our mission. The Williams Syndrome Association actively supports and funds research initiatives, with a focus on early investigators that shed light on this rare genetic condition. By collaborating with researchers, we aim to uncover new therapies, interventions, and insights that will enhance the lives of those we love. Our commitment to research fuels hope for a brighter future where individuals with Williams syndrome can thrive and reach their fullest potential.

Please know that I am truly honored to be a part of the Williams Syndrome Association and witness its incredible impact on the lives of so many. Together, through Connections, Resources, and Research, we are creating a world that embraces and celebrates the uniqueness of Williams syndrome.

P.S. Don’t forget to save the date for the 2024 Phoenix convention: July 9-13, 2024. We just returned from our first in-person pre-convention meeting, and I am confident this convention will be one for the books. The WSA will be sending out a stakeholder session interest survey shortly, so stay tuned for more information.

Reminder: We are where you are!

The WSA has moved to a distributed team working remotely. This allows us to meet you more frequently where you are, in your communities!

We know there will still be a need to send physical mail to the WSA, so we decided to go back to our roots! The WSA was incorporated in New Jersey, so we’re excited to share a new mailing address where our mail will be safely processed and organized:

Williams Syndrome Association

243 Broadway #9188

Newark, NJ 07104

Our phone number hasn’t changed - contact us at 248-244-2229 or 800-806-1871. Our enhanced phone system allows you to directly reach whom you need - by topic or name of staff member.

You can also reach us by email!

Interest in hosting an awareness walk? Email Denise: dcallen@williams-syndrome.org

Need family support or program information? Email Joel at jliestman@williams-syndrome.org

Changing Lives at Whispering Trails Summer Camp

This year, I had the privilege of partnering with our summer camp leadership team to plan and execute our 2023 Whispering Trails Summer Camps! Though I’ve been involved with the WSA for nearly 20 years, this was my first time attending camp - and I walked away permanently impacted. And I know I wasn’t the only one!

Campers, parents, counselors, and camp staff were thrilled to come together again (after a break last year) for lots of “firsts” at the WSA’s Whispering Trails Therapy and Teen Camps! 28 therapy campers (kids with WS ages 6 - 12) each with a parent/caregiver and 34 teen campers (teens with WS ages 13 - 20) from as far away as Germany joined us for camp July 30 - August 4 at our new location at Camp Twin Lakes, in Rutledge, Georgia! (First time combining both programs, first time at this camp location, first time in the Southeast, and 53% were first time campers!) Campers enjoyed swimming, boating, the zipline and giant swing, visits to a working farm, and lots of campfires, in addition to their therapeutic and music sessions - all while making friendships that will last a lifetime! By combining camps during the same week, we were able to offer an extra day of camp for our 12-year-old campers and their parent/caregiver to observe teen camp and evaluate their readiness for teen camp - another first! We also launched a new Counselor-in-Training program, allowing siblings, as well as individuals with Williams syndrome, the opportunity to test out what it’s like to be a camper.

Thank you to our camp leadership team, program leaders, counselors, counselors-in-training, therapists, and a few incredible volunteers for ensuring camp was an incredible experience for everyone while rolling with all the challenges posed by all of our “firsts.” A special thanks to Alex Carrico and Donovon Velociraptor, Camp Directors extraordinaire who “retired” after this summer. (Though I’m hoping we’ll see them around, maybe in different roles!) The lives of countless people have been forever changed due to your leadership, talents, and love for our community. We can’t thank you enough for your service. If you’ve never joined us for camp, what are you waiting for??? Watch for information about camp dates for 2024 later this year!

Sarah Giddings

VP of Programs and Services

Monthly Virtual Adventure Seekers Meeting Zooms

It's time to register for our September 2023 Zooms!

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

September Zoom Meetings

You can join us for the Tuesday Shenanigans, September 19 at 4pm ET/ 3PM CT/ 2pm MT/ 1pm PT or the Thursday Hullabaloo, September 21 at 7pm ET/ 6pm CT/ 5pm MT/ 4pm PT.

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

September 19, 4pm ET: Adventure Seekers - Register here



September 21, 7pm ET: Adventure Seekers - Register here

Adventure Seekers Orlando Trip

September 28 - October 1, 2023

Adventure Seekers Orlando T-shirts

Attention all Adventure Seekers! Our friends at Outshine Labels designed a super fun t-shirt - in a wide variety of colors - just for us! We're excited about this year's trip to Orlando, Florida, and can't wait to see as many of you as we can! Grab a T-Shirt (or two) so we stand out in the crowd looking our best and spreading awareness for Williams syndrome. Your t-shirts will be shipped directly to you, so be sure to order early enough to bring them with you!

All groups meet 8-9 PM ET. Click on a group to register. You must register to attend.

SparkGood Program

We're excited to share another way you can support the WSA and the work we're doing!

Donating to the WSA through the Walmart Sparkgood Program is simple, easy, and impactful!

Please listen as our Director of Special Events and Legacy Giving, Ann Marie, shares how the program works.

We thank you in advance for your support! Often the smallest actions can create the biggest ripples of change.

August is National Make-A-Will Month!

August is National Make-A-Will Month. Everyone needs a will, whether they’re 18 or 80. And there’s no better moment than now to find peace of mind in planning for the future of your loved ones and the causes that mean the most to you. We invite you to join the amazing people who have helped the Williams Syndrome Association by including legacy gifts in their wills. Your investment in the future of the WSA will have a lasting impact on our community. Your generosity will enable the WSA to fulfill our mission of providing support to all individuals with Williams syndrome and their families for a lifetime! Specialized educational and enrichment programs and resources, as well as recommendations for and access to additional important resources and agencies, scholarships for non-WSA programs, financial aid for travel and lodging associated with critical medical and surgical procedures, research funding, and important partnerships, are just a few of the many ways that your bequest will help ensure that individuals with WS have the best opportunity for healthy and happy lives. Generosity comes in many forms, and we are here to work with you to find a charitable plan that lets you provide for your family and establish your philanthropic legacy in support of your interests and values at the WSA.

To make a lasting difference, contact Ann Marie Sanders at asanders@williams-syndrome.org, Director of Special Events and Legacy Giving.

Thank You, Walk Coordinators!

We are thrilled to share the incredible success of the Walk for Williams event, and we owe it all to our amazing coordinators!

2023 Walk Coordinators (March-July)

Their passion and dedication ignited the spark that brought us together for this meaningful cause. Through their hard work and enthusiasm, they united our community and raised essential funds to support connections, research, and resources for individuals with Williams syndrome and their families.

Beyond the numbers, the Walk for Williams creates lasting connections and strengthens our community spirit. To our coordinators, we extend our deepest gratitude for their unwavering commitment. Their efforts make a genuine difference, and we are grateful to have them as an essential part of our community.

Are you interested in coordinating a walk in your area? Step forward to be a Walk for Williams coordinator, and let's make a difference, one step at a time!

Upcoming Events - Highlights

Check out the highlighted events below - you can find more events and local gatherings 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.

Ready FORE More Golf?!

Our WSA Golf Tournaments have been so successful, and four more are still tee'd up! Check them out below and tell your friends.

Last month in Tucson, Arizona, the Williams Syndrome Awareness Golf Scramble, the first of its kind in that area, was a huge success! Months of planning culminated in a great day on the course! 108 Golfers participated, and $16.5k was raised.

Thank you so much to organizers Brandon and Carley Nielson, parents of Lane, who has WS. We are so grateful to you!

Harness Round-up Program

Your small change can make a big impact over time! Automatically round up your purchases, both in-store and online, and donate the difference to the Williams Syndrome Association!

SAVE THE DATE - 2024 Williams Syndrome Convention

Stay tuned for more information soon, and registration and room block details in early 2024.

The WSA partners with LanguageLine Solutions to Offer On-Demand Translation Services

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.

All you need to do is call our office to access this service; the rest is seamless.

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!

This week, Kayla Patak joined Brendan and Jen to talk about Whispering Trails Camp and how she uses that experience to prepare for the new school year. Then, Speech Pathologist Bianca Corozzo discussed her new consultancy with the WSA and how she hopes to help families and individuals with WS find tools to become stronger communicators. You can reach her at bcorozzo@williams-syndrome.org or go to https://www.williams-syndrome.org/consultants-and-partners to learn more and follow the link to schedule a session with her.

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

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.

Help healthcare professionals better support the Williams Syndrome Community transitioning to adult-centered healthcare with your input.

You are invited to participate in a graduate research study exploring the current state of the healthcare transition for adults with Williams syndrome, facilitated by Andrea Johnson, a graduate student at the University of South Carolina pursuing a master’s degree in Genetic Counseling. Her research aims to learn more about the experiences and perspectives of adults with Williams syndrome to determine patient and caregiver satisfaction with adult care. In addition, she hopes to use this study to describe the needs of the Williams syndrome community so that healthcare providers can serve as advocates during the transition to adult care.

This online survey is intended for caregivers of an adult (18+) with Williams syndrome. A caregiver includes but is not limited to a parent, grandparent, sibling, family member, or paid care provider who looks after an individual with Williams syndrome and facilitates/has facilitated their transition to adult care. Therefore, questionnaire responses that only come from the intended audience will be included in the study analysis.

If you have any questions regarding this research, please email Andrea Johnson at transition2adultcarews.uscstudy@gmail.com

WSA Research Partnership with the University of Wisconsin Milwaukee

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! We need your help to spread the word. Please forward this to anyone who may be interested in participating.

Session 2 on August 29th: register here.

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/

Casting Call! Looking for a young actress (ages 9-15) with Williams syndrome to star in a movie about friendship, second chances, and going after your dreams!

Prior acting experience is preferred but not required. Basketball skills are a plus.

I Got Next is a feature narrative film about a young girl named Taylor with Williams syndrome who loves basketball and wants to play for her local team, but is never given the opportunity because of the misconceptions about her disability. 

Synopsis:

At the local rec center, Taylor meets Jayla, a former high school basketball standout, who has fallen on tough times, after the death of her younger brother. Jayla helps Taylor work on her basketball skills to get into a local basketball game, while Taylor shows Jayla how to love and feel again. Together, Jayla has a second chance to be a big sister, and Taylor has an opportunity to prove you can do anything in life, regardless of what others think is possible.

The producer of I Got Next is Andrew Pilkington. He is best known for his film, Best Summer Ever, as well as his recent documentary on the Special Olympics.

The director of I Got Next is Chris Baxter. He has a brother with Williams syndrome and this is his second feature film.

Shoot dates are the Spring or Summer of 2024 for approximately 30 days. SAG rate is negotiable. All travel and lodging covered, additional expenses are negotiable. New England/greater Boston area.

If interested, please contact:

Chris Baxter

bax4short@gmail.com

603-957-1444

And/or

Andrew Pilkington

A.c.pilkington53@gmail.com

508-314-9555

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