2020 for the WSA began much like we had hoped – with celebrations of an excellent 2019 which had seen program and income growth, research advances, and a remarkable gift providing the WSA with the funding needed to create a clinical consortium for Williams syndrome.
Message from the Executive Director
When the country was first shutting down and we were forced to cancel the walks, and then the convention and then the camps, it was difficult to imagine how we could ever meet our programming goals or operations budget for 2020. In a matter of weeks, we lost the source (awareness walks and events) of more than 80% of our program funding, as well as our primary programs for individuals with Williams syndrome and their families. Only one thing was certain: we could not and would not simply sit back and wait to see what happened.
I hope this message finds you and your loved ones healthy and able to find moments of enjoyment despite social distancing, interrupted work schedules, and new family demands. As spring emerges and we're able to celebrate the new season, I hope these moments might even bring a sense of rejuvenation.
At the WSA, we are also focused on rejuvenation-the process of making something fresh or new again.
Dear families and friends,
As I sat down to write this update, I was reminded that the statement "what a difference a day makes" has never meant more than it has each day over the past several weeks - not just for me and you, but for our children, and for everyone worldwide.
The WSA is proud to be celebrating 35 years of support to individuals with Williams syndrome. When a handful of families first applied for nonprofit status for the Williams Syndrome Association back in 1983, no one really knew how big the WSA might become, or the range of support that the organization could, and would, provide to families. They only knew they wanted to help in every way possible.
December 31, 2018 marked the end of our official 35th year – a milestone that makes us extremely proud. As we begin the next 35 years, I want to personally thank each one of you for making our association so vibrant and helping us grow in so many ways.
Dr. Ursula Bellugi: Special Friend to the WSA, Individuals with Williams Syndrome, and the Research Community
After nearly forty-eight years at the Salk Institute for Biological Studies, Dr. Ursula Bellugi has retired. The closing of the Laboratory for Cognitive Neuroscience last month has signaled the end of an era.
Those of us who are parents assume that we will be our childrens’ hero- and we are, MOST of the time. But when we become parents to an individual with Williams syndrome, the potential for our role as heroes changes dramatically... and not just in regard to our son or daughter. Throughout our journey with a child with Williams, we will both be heroes and receive the benefits of many heroic acts.
When our son or daughter is born we immediately want everyone – especially our immediate and extended family to share in our joy. But what happens when sometime in the future – perhaps within days, but more likely months, or even years down the road, we learn that our son or daughter is challenged in some way – medically, developmentally or in the case of those with Williams syndrome, medically AND developmentally.
How many times have we sat around the kitchen table at a family gathering and listened to our elders tell us how much things have changed – they love to remind us that it wasn’t that long ago that candy bars were a quarter, gasoline was less than $1 per gallon and you could go to a Saturday Matinee for just a dollar or two? It is not just the material things that have changed in price and quality over the years. As the WSA becomes more involved in its Assistive Tec