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 the Education Consultant for the WSA, I have the opportunity to support many families as they navigate the special education system. Usually, this is exciting as I get to meet teachers and teams and help them understand how to teach their students with Williams syndrome (WS). Usually, this is the case.

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.

The learner with Williams syndrome (WS) can be both the biggest joy and the biggest challenge for the educators charged with their instruction.  Students with Williams syndrome are often caring, engaging, and excited learners. They also have a unique learning profile which requires educators to teach to the student and allow him or her to access their curriculum in unique ways.

Did you know that many funding sources are available for families who would like to attend educational conventions and conferences such as ours in Schaumburg, Illinois from July 12-16, 2022? Have you been wondering where/how to start? Now is the time to start planning!

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. 

Another Williams Syndrome Awareness month is in the books…and it was truly noteworthy! For me personally, and I hope for some of you as well, it felt SO GOOD to have been able to spend part of the month visiting family members and other WSA families…in person! It was great to see photos of a few “in-person” events pop up as folks got vaccinated and felt comfortable gathering.

I’m writing to share with you an exciting announcement about how the Williams Syndrome Association hopes to reach more families than ever before, through the creation of a formal Family Support Network.

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. A phone call to Terry at the national office the day after the show began what would be more than 20 years of very special support to the WSA.

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.