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.

Most of us are familiar with the theory of ‘six degrees of separation’ – maybe you saw the play or movie of the same name starring Will Smith, or watched the new Discovery Series on the topic with Mike Rowe, or perhaps you’ve played the Six Degrees of Kevin Bacon game. It’s the idea that all people, on average, are six, or fewer, social connections away from each other. 

The WSA lost a very special friend and volunteer this month with the passing of Barbara Scheiber.  Barbara and her husband Walter first found the WSA in 1994, when they watched the 60 Minutes special on Williams syndrome, and realized that their 36-year-old son, Robert, had nearly every characteristic mentioned.

The diagnosis of Williams syndrome presents challenges for every individual and his or her family. Williams syndrome is a spectrum disorder. There is a great deal of variability in individuals throughout the spectrum. Medical concerns and learning challenges, emotional issues, and anxiety are common and can be all-consuming at times. The severity of the challenges varies and can ebb and flow over the years.

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.

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.

COVID-19 has dramatically changed the landscape of school in general and special education in particular. Schools may be face-to-face, hybrid, virtual, or some combination of all of those things.  IEP meetings are conducted over zoom and service provision for therapies and social work has completely changed.

Joelle Packard recently embarked on a new journey and moved into her dorm to start the college program CarolinaLIFE at University of South Carolina.

The coronavirus/COVID-19 pandemic has had a dramatic impact on everyone.  As an increasing number of places begin loosening their initial restrictions, every family is now struggling to establish a “new normal”.  

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.