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 was also able to spread awareness in many (MN, WI, ND, WA, MT, and OR) states during a cross-country drive to see my son, Adam. Each time I wore an awareness shirt or my WSA hat and I was asked my favorite question – “Do you mind if I ask what Williams syndrome is?” it was great to tell them that I didn’t mind at all, and spent a minute or two talking about WS. It was clear from the many photos posted throughout the month that I wasn’t alone in my efforts. And whether you were on a trip as I was, or out in your local community, you made a difference.
We don’t always think about the impact of wearing our shirts, hats, and other WS gear, but I got to thinking about it during the drive – in a non-pandemic year, the WSA distributes about 8,000 shirts during awareness month (plus another 1000 or so logo items throughout the year). Additionally, in 2021, nearly 100 of our Adventure Seekers also helped out by donning special pins proclaiming “I’m 1 in 10,000” and telling folks why. More than nine thousand items worn multiple times throughout the month of May, creates a measurable chance that someone will ask that simple question, or maybe just make a mental note and then look up Williams syndrome when they get home. The potential impact of that one small act of wearing our awareness gear is tremendous! One of the folks I talked to happened to be a school bus driver, and as I spoke, he began smiling and nodding his head. As it turned out, there is a young boy without a diagnosis on his bus, who fits the profile perfectly. My new friend was very excited about speaking to the boy’s parents about Williams syndrome the following Monday.
Social media is also an incredible awareness tool. Many of you took to the social media platforms during May to comment and engage with our posts as well as share your own wonderful posts and stories on FB, Instagram, Twitter, Linkedin, and Tik Tok. Your efforts have made a terrific impact! You also contacted your city and state governments to proclaim May as WS awareness month, alerted companies who produce products our communities enjoy, shared your family’s journey with WS for local television and newspaper interviews, and more. Each was important.
Literally, thousands of people learned about Williams syndrome this month for the first time – on the WSA social media pages alone, engagement was up more than 100% and the number of WSA followers on each of the different platforms increased daily. I’m sure you all saw a similar impact personally as well. Add to that the special International Williams Syndrome day on May 20, and we truly made a difference! Working together, WE LEAD 35,000 “FIRST-TIME” VISITORS to the WSA website throughout the month of May, and most of our new visitors took the time to read the full description of Williams syndrome and to learn how WS is diagnosed.
And then there was the fundraising. Although it was less formal this year without the walks, fundraising is still an important part of Awareness Month, and it is still extremely important to help sustain the operations of the WSA. We are extremely grateful to every family member or friend of the WSA Community who placed their trust in us with a donation. Together we raised more than $75,000 in just 30 days.
Williams syndrome is significantly less rare today than it was on April 30th, and that means that every child and adult with Williams syndrome will benefit. My heart is truly happy about that and I hope yours is too! Thanks for joining us for a very special Williams Syndrome Awareness Month! Here are a few photos from my and other May visits with WSA families. I hope to see many more of you in the months ahead.
