WSA Blog

Happy Williams Syndrome Awareness Month! As Board President, I’m often asked “What’s your elevator pitch? How do you define Williams syndrome to someone that’s never heard of it?” Here’s where I start - Williams syndrome is a rare genetic condition caused by a missing piece of genetic material on chromosome 7.

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.

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.

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.

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.