Terry Monkaba

When the country was first shutting down and we were forced to cancel the walks, and then the convention and then the camps, it was difficult to imagine how we could ever meet our programming goals or operations budget for 2020.  In a matter of weeks, we lost the source (awareness walks and events) of more than 80% of our program funding, as well as our primary programs for individuals with Williams syndrome and their families. Only one thing was certain: we could not and would not simply sit back and wait to see what happened.

We immediately began the process of adding new resources to help keep everyone informed about the implications of COVID-19 for individuals with Williams syndrome, while also helping individuals and families find ways to adjust to the increased stress, anxiety and isolation that quarantine and social distancing were causing. At the same time, we worked to create virtual alternatives for both programs and fundraising.  My staff and I watched countless tutorials, developed plans, and set to work.  Forecasts were made and goals created…all based largely on guesswork.  There was no data to rely on. 

But we knew one thing for sure – we would not charge a fee for any virtual program. In this most unusual of years, with the economy severely impacted and programming that was largely untried, all programs would be complimentary. Everyone welcome/donations gratefully accepted. And we dared to hope.

We hoped that families would find our response to COVID-19 adequate.  We hoped that the new resources and virtual programs would be helpful.  We hoped that fundraising events and messaging would be appropriate at a time when it is so difficult and yet so necessary to ask. We hoped that by early August, we could secure 50% of the funding needed to secure programming and operations for 2020. AND WE HAVE! 

With the help of nearly 3,000 participants, we have met our goal and I cannot thank you enough! Throughout Ben’s life, I have often been brought to tears by his successes – when he finally walked at age four, when he overcame each surgical challenge, when he performed in the community.  At one of those times, early on, Ben asked me why I was crying, and I told him they were “happy tears.” And each time after that, Ben has always remarked, “those are happy tears, right Mom?”

On Saturday morning, as the opening ceremony for our inaugural walk played, and suddenly there were hearts and thumbs up and emoji’s flying up the side of the screen, and throughout the day as photos and videos were posted from throughout the U.S., and our fundraising thermometer continued to rise, I found myself, once again, with “happy tears” in my eyes.  We had worked so hard. We had dared to hope. And our amazing community of families and friends came together to celebrate individuals with Williams syndrome, and help ensure that the WSA can continue to provide the programs that we’ve all come to rely on. 

With your support, in a year when we did not know what might happen, we are now halfway to balancing our budget,  halfway to ensuring our ability to continue to provide quality programs, scholarships and research funding without pause. There is more to be done, but achieving this milestone provides me with tremendous affirmation for the work that we do and speaks to the strength of a community that I am proud to be part of. 

Thank you for joining us for the first ever virtual Walk for Williams. Thank you for all you do to support the WSA. And thank you for helping to create a second family that is strong, resilient, and above all, special!  

Terry Monkaba, Executive Director, WSA

PS - I hope you enjoy the first of three short videos capturing the highlights of #EverywhereWSA.  Check Facebook this Thursday, August 13 and again the following two Thursdays for parts 2 and 3 of our virtual Walk for Williams 2020.