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Home » WSA Blog

Our 40th Anniversary…A Year of Transition for the WSA

02/08/2022 - 1:03 am |

Terry Monkaba

Dear Friends,

The WSA celebrates its 40th anniversary this year, and there is great cause for celebration. The future for individuals with Williams syndrome looks much different today than it did back in 1982 when the Association was officially chartered. And the future for the WSA and the organization’s ability to provide resources and support for families has changed dramatically too.

Throughout the WSA’s history, we have worked hard to create strategic plans that were both forward-thinking and nimble ensuring that we would be able to adapt to a changing world without losing sight of our mission. As we emerge from the pandemic the WSA has new challenges to confront, but also new opportunities to embrace: awareness is greater than ever and continues to grow, the WSA’s Clinical Consortium is officially underway and several historic gifts will have a tremendous impact on life-changing research and clinical care for those with Williams syndrome

We are at a critical time for the Association a moment when significant change can and should occur.  It is time to chart the course for our future and continued success in a post-pandemic world.  And while I would love to be a part of that planning, I believe it is the right time for the next leader of the WSA, working with the Board of Trustees, to set the course as he or she will be responsible for carrying out that mission for years to come.

Therefore, after much thought, I have decided to retire from my position as Executive Director of the Williams Syndrome Association shortly after the national convention this summer.

The WSA has been a personal and professional home to me for 35 years.  Shortly after our son Ben had heart surgery as an infant, we were put in contact with the WSA. That contact set us on a course with Ben that was no longer solitary. I went on to volunteer as a regional coordinator, joined the Board of Trustees, and in 1996 was hired as the WSA’s Executive Director.

I am proud of the tremendous progress we have made together over the years. The WSA has grown from a small, grassroots organization supporting a handful of families to a respected non-profit supporting a community of thousands.  We provide programming and resources throughout the lifespan and fund cutting-edge medical research. During the pandemic, we were forced to pivot quickly and yet reached more families than ever before by providing our programs virtually, including a virtual convention! Most of all, the WSA provides a community of families walking the same path. None of us benefits from walking this path alone, and throughout my career with the WSA, I have tried never to lose sight of the family to family support that is so important to a successful journey with Williams syndrome. Just as each of you has reached out for the support of other parents during your journey, I have reached out to many of you during mine. I believe that is an extremely important part of who we are. Many of you have helped me to maintain that “heart”, helping to ensure that we continue to be an organization that personally connects with our membership, and I cannot thank you enough.

My career with the WSA has truly been a “labor of love”, and I look forward to watching the WSA continue to evolve, advancing the interests of all individuals with Williams syndrome, and helping families throughout their journey. For my part, I will stay involved but primarily as a parent connecting with newly diagnosed families, and helping them to see beyond the challenges of a diagnosis of Williams syndrome to the countless joys they will also encounter on their journey, and providing them with a knowledge of the resources that they will need along the way.

Thank you all for your support of my professional and personal journey with Williams syndrome and the WSA. I look forward to seeing many of you at the national convention this summer.

With great appreciation and friendship,

Message from the Executive Director

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The WSA upholds the following positions on inclusion.  We believe that:

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
  • high expectations should be the norm, and that individuals with WS and their families should decide how they best learn, work, and enjoy social settings
  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

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