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. Individuals with Williams syndrome often have cardiovascular problems, intellectual disability, digestive issues, sleep problems, joint problems, and social and emotional difficulties. Despite these challenges, people with Williams syndrome are valuable members of their communities who deserve acceptance and support. With the right resources and understanding, individuals with Williams syndrome can lead fulfilling and meaningful lives, while also contributing to the world around them.
This May, through events, fundraisers, social media campaigns, and other initiatives, our main goals are to increase awareness of the challenges faced by individuals with Williams syndrome, promote early diagnosis and intervention, and foster a sense of community and belonging among those affected by the condition.
One thing we’ve learned through recent listening sessions, discussions, and surveys is the Williams Syndrome Association needs to consider refining how we portray Williams syndrome and that perhaps we haven’t captured the entirety of the condition, or its vast impacts, in what we’ve shared as an organization. We’re working on it! (Also, genetics are wild like that! I know how Williams syndrome affects our daughter may be vastly different than the impacts your loved one experiences!)
So, here’s where you come in! We want and encourage you to share your journey - both in your communities and on your social media channels. Chicago-area mom, Jenna Ottenheimer, created an awesome Awareness Kit for our members to use to spread awareness for Williams syndrome. (Thanks Jenna!) You can use this as a guide if you want, but there may be additional topics you’d like to cover, and we welcome that!
Overall, Williams Syndrome Awareness Month serves as an important opportunity to highlight the strengths and challenges of those affected by Williams syndrome, promote research and understanding, and foster a more inclusive and supportive society for all. We cannot do that alone, at least not in a way that tells the whole picture! Be sure to tag the WSA in your social posts - we hope to share as many as we are able!
Thanks for your help! We hope this is our best Awareness Month yet!
President, Board of Trustees
Williams Syndrome Association