The final days of December are nearly always a time for reflection. I find that reflecting on personal, family, and WSA activities always helps me put life in perspective. More often than not, accomplishments and causes for celebration outweigh the challenges and that is always a great way to end one year and set new goals for the next.
At the WSA, we set many goals for 2017. They ranged from providing parent-friendly reviews of educational research and an educational support program to raising one million dollars for critical research and increasing membership in both the WS Registry and the WSA by 35 percent. In addition, we distributed requests for new research proposals, increased our social media outreach, and enlisted the help of a public relations professional to increase awareness of Williams syndrome. The WSA staff was increased to include full-time support and a comprehensive program for activities and resources on the regional level, and a new program was developed to target medical professionals with the latest information about Williams syndrome and the Williams Syndrome Association.
Planning for the national convention in Baltimore next July is in full swing and the WSA is working to secure a voice on the Congressional workgroup on Employment and Empowerment for the Intellectual Disability Community. Each initiative and program took shape in different ways throughout the year with the help of hundreds of wonderful volunteers.
Perhaps you planned or attended an event, donned very cool “WSA swag” such as socks, t-shirts, and hats in your community, explained Williams syndrome to a new friend, gave a school presentation, biked across the country in honor of a relative with WS, gave a fellow parent support in person or online, followed us on social media and shared our posts, shared your story on television or social media, provided valuable medical records to our Registry, donated proceeds from the sale of a personally designed product or special event, or made a personal contribution to the WSA.
Whatever you contributed was greatly appreciated and we are proud to count you as an active member of our growing and powerful community – one that started with a handful of parents and has grown to include thousands of parents as well as relatives, friends, and professionals.
With your help, we have made great strides toward achieving our annual goals and continue to support many individuals with Williams syndrome and their families. Our efforts to increase awareness resulted in more mentions of Williams syndrome in the media this year than ever before. Did you know that the subject of Williams syndrome appears almost daily in a high school or college curriculum or quiz? Were you aware that nearly 8,000 people joined us in awareness walks and other events in May? Did you know that hundreds of people access the WSA website daily, and many, many more discuss Williams syndrome in online groups and forums and through social media? Slowly but surely (and the pace is increasing!) we are raising awareness of Williams syndrome!
Our efforts to raise funds for critical research into the most troubling aspects of Williams syndrome did not go unrewarded. The 2016 annual appeal and the White Night Gala in NYC provided funding for much needed cardiovascular and anesthesia research studies at Boston Children’s Hospital and Columbia Medical Center. Additionally, we were able to renew funding for cognitive studies on Williams syndrome at the University of Louisville and important anxiety and behavior studies at the University of Wisconsin – Milwaukee.
In 2017, the WSA provided camp and post-secondary scholarships and medical treatment assistance funding for 25 families and welcomed more than 70 young adults to new camp and travel opportunities. Through the walks and an additional 65 events across the United States, hundreds of WSA families were able to get together and personally share their questions, frustrations, hopes and dreams for their children of all ages with Williams syndrome.
We made great progress toward completing our goals for 2017 and look forward to even greater accomplishments in 2018 – together we will continue to provide the support, resources, and education we all need to ensure the inclusion and well-being of individuals with Williams syndrome. Thank you for joining us!
