Dr. Ursula Bellugi, a pioneer in the study of Williams syndrome and a friend to WSA families since 1981, passed away on Sunday, April 17 at the age of 91. Dr. Bellugi was a leading researcher at the Salk Institute for Biological Studies for nearly 50 years – breaking barriers in the early years as a female scientist. As a researcher of the highest caliber, she received many prestigious awards for her work in the field of linguistics.
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.
Do you remember when your loved one with Williams syndrome was first diagnosed? Whether the diagnosis was recent, or many years ago, I’m sure the details are still as sharp as they were that day. Regardless of the circumstances leading to the diagnosis or the age of our loved one – that moment is forever etched in our minds…it is the moment when our vision of the future became clouded with a new uncertainty – the moment when there were very few answers and myriad new questions.
Thirty-one years ago, the Americans with Disabilities Act was signed into law. The ADA was designed to prohibit discrimination against individuals with disabilities – including in education, transportation, and employment. People first started noticing the effects of the law with physical changes – curb cuts, handicap ramps on busses, accessible buildings, etc. In the years since, much more has been done to promote inclusion.
Following a year like 2020, and thinking about all that happened, I am thrilled that the words that come to mind as I think specifically about the WSA are: grateful, humbled, appreciative, and so importantly, proud and excited. To have only positive thoughts for the future following a year that seemed destined to provide only negatives is amazing.
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.
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.
Dear Friends,
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.
