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! Your creativity and generosity as you worked to donate, spread the word, attend or plan an event, design shirts, bake specialized cookies and cakes, create photo frames, bows and headbands, poster boards and videos...the list goes on, and the effect was amazing. Please be assured that whatever you did was recognized and appreciated by each of us.
Where should I start – Awareness month would not happen without event coordinators and their committees. Special thanks to our coordinators and to each and every person who sold tickets, set up tables, provided entertainment, promoted events, helped with food, cleaned up and much more. Nearly 8,000 of you were able to join us at the events - thank you for forming teams, gathering friends and attending the walks, golf outings, family fun days, baseball games and more.
The events are only one portion of our awareness campaign. Some of you shared our daily posts on the traits of WS. Many of you educated your networks, reaching people with compelling personal stories. Others donned the t-shirts and answered questions when people asked “What is Williams syndrome”? Some of you spread the word about Williams syndrome at your workplace and involved your coworkers, or provided an opportunity for local retail volunteers to help with a project and learn about Williams syndrome. A large group of “Kohl’s Cares” volunteers created wonderful note cards, and Kohl’s provided a donation in honor of their employee volunteers.
Some of you worked to get your city or state to proclaim May as WS awareness month. Others were interviewed for radio, television and print news stories in markets big and small, sharing your family stories and promoting the walks. There was wonderful artwork created, with artists selling and donating a portion of the proceeds to the WSA. Creative graphics were designed and shared with the community for people to use for their social media posts. One grandmother ran three miles each day for the month of May and encouraged her friends/coworkers to be involved with pledges to raise money and awareness. The generosity was remarkable, and with each activity, many learned more about Williams syndrome.
And then there was our shared mission and efforts to increase the legacy of increased awareness for Jonathan Martinez and honor the Martinez family. Thank you to all who made boards, posters and other visuals to honor Jonathan at the walks, and for the many special messages of condolence and support that were sent to his parents.
There are so many things to be gained from our awareness month activities. I’m sure that each of you has a favorite aspect. For me, the best part of awareness month is the camaraderie – the nationwide (even worldwide!) feeling of overwhelming support and celebration. Williams syndrome presents each of our children (and us!) with a unique mix of challenges and gifts – we talk about them all the time. For many of us, the challenges always seem to be at the forefront of our lives as we attend appointments, fight for services and deal with the frustrations of not having all the answers about Williams syndrome that we want and need. But during the events of Awareness month, as we create teams in the name of our sons and daughters, we take a moment to focus primarily on the “good stuff.” We join together to celebrate our kids with Williams syndrome and the tremendous love we all have for them is so evident on the team posters, and the special team shirts and the smiles of every individual’s “teammate” as they gather together. I love that, and I hope you do too. We need to do that more often – not just during the month of May! In my view, it is through celebrating our children’s gifts that we gain the strength and the dedication needed to wage the battles against the challenges of Williams syndrome.
There is a broader impact as well. If we take every opportunity we have to share our kids with the world, door will begin to open – our kids will work the magic with their special personalities and then we will have the opportunity to follow up with all the other characteristics – both celebratory and challenging (even devastating!) of Williams syndrome. Our story will be told! Our efforts over the last several years have made an impact – gradually, awareness outside of our own communities has been growing. That is great but it’s not good enough – it is only through year-round efforts that we will be able to pick up the pace and gather the national support we need to help us find the answers!
-Terry Monkaba