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. It affects multiple systems in the body, resulting in physical, cognitive, and social difficulties.
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.
Jenna Garrett, mom to JoLynn, shared a great story recently about the first day of school and some things she came to understand about inclusion and her daughter:
Increased knowledge of Williams syndrome is a year-round priority for the WSA. Our vision is that all individuals with Williams syndrome will have the support they need throughout their lifespan to live healthy, self-directed, productive and fulfilling lives, and that is a tall order. That’s why each year, during the month of May, we ask that everyone in our community joins us in a special effort to increase awareness in your communities.
May is #WSAwareness month! We have #Walk4Williams events (and they don't have to be walks!) across the country but awareness can come in many other forms as well. Looking for some ideas? The WSA knows that our wonderful community shares stories and awareness about Williams syndrome throughout the year, but in May, we REALLY make it happen. It's our special time to highlight Williams syndrome, and there are so many ways to do just that.
We have “officially” wrapped up 2017’s awareness month campaign, and it was successful in many ways – 35+ events nationwide; 11,000+ participants; more than $500,000 was raised for WSA programming and family support; local media attention... As parents, relatives, and friends of someone with Williams syndrome, we are all extremely grateful for the individual and group efforts that are necessary to make each awareness month campaign successful - Thank you!
We all want increased awareness for Williams syndrome. But it is likely that for each of us, the importance of awareness varies. Each of our children is AN INDIVIDUAL with Williams syndrome – that means that each of our journeys with WS is individual too. If our children are medically fragile, research may be the driving force for awareness; if our children are struggling in school, awareness leading to better education may be paramount. Similarly, if our child is young an