Dear families and friends,
As I sat down to write this update, I was reminded that the statement "what a difference a day makes" has never meant more than it has each day over the past several weeks - not just for me and you, but for our children, and for everyone worldwide.
As I connect with nonprofit experts, WSA staff, and volunteers through video calls and webinars, and read countless updates on COVID-19, I make further adjustments to the new normal. It's critical that we all continue to work hard to "flatten the curve" and keep our loved ones safe. I am in awe of the men and women on the front lines of defense and I am encouraged by our flexibility and resourcefulness as we take on jobs we never dreamed would be ours. We have become teachers and activity directors and have quickly adopted new technologies to keep communication lines open and find ways to conduct business virtually in every field - from medicine and accounting to engineering and fundraising.
Through it all, I feel the importance of providing clear and consistent communication to you - parents and caregivers, those with Williams syndrome, dedicated volunteers and generous donors. Community is so important at this time, and finding new ways to support each other is critical.
As parents and caregivers of individuals with Williams syndrome, we have an additional and unique challenge. Throughout our children's lives, we have celebrated their wonderful personalities and heralded their ability to make an impact on their community as they seek out human interaction and close contact with those around them. In the midst of this health crisis, we must suddenly change course, and find ways to help our children understand that close contact can be dangerous - that not only must they eliminate the drive to hug, but even to shake hands and high five, or stand close to the person they are talking to - it's HARD for them... and it's hard for us!
My son, Ben and his housemate Brett are in their 30s, and although it is easier for them to be flexible than it is for younger children, not being able to join friends in the community gets harder for them every day. It's especially difficult for them to understand that the pandemic is not finite - that it won't simply be over on May 12th or June 1st.
Delivering this message, along with the message that home has now become school, and visiting can only happen virtually has a special set of challenges for each of us, especially for those with children who struggle to adjust to a completely disrupted routine. We are here to help in any way we can. Please don't hesitate to ask.
The WSA is facing new challenges as well. Like you, we are doing all we can to adapt to our new normal - building internal systems to help us all work remotely, compiling expert advice to respond to the needs of our community, and finding new ways to fund and provide programming now that our normal delivery channels have been severely disrupted.
For me, and for all of the WSA staff and Board, it is especially difficult at this time to continually have to provide the news that no one wants to hear. First, we had to cancel the educational conference in Puerto Rico scheduled for April. Please know, we are still very committed to bringing the inaugural conference to our community in Puerto Rico as soon as conditions safely allow.
That cancellation was quickly followed by the announcement that all our "Walks for Williams" scheduled for late April, all of May and early June would be cancelled or deferred as well. This is especially difficult as we are not only losing wonderful awareness events, this is also the time when our tight-knit and generous community comes together to raise more than two-thirds of the WSA's annual operating budget.
Now, in the face of continued uncertainty regarding the course of COVID-19, we felt it was imperative to cancel the national convention scheduled for July in Phoenix. This was a heartbreaking decision, but it is a decision that we are very confident was the right one to make - your health and safety is our top priority.
We are working diligently to find creative ways to provide alternate, virtual programming. Our plans include special digital awareness activities throughout the month of May and virtual convention sessions this summer. We are also very sensitive to the fact that May will not be the time for a major fundraising drive and we are re-imagining the mission-awareness fundraising strategy for 2020. I would like to extend a special thank you to those who are inspired to continue to support Williams syndrome awareness efforts. We are extremely grateful for your generosity and loyalty.
I invite you to join us on Tuesday, April 7 at 8 PM EST for more details on the cancellations and a live Q&A session regarding our plans to take programming "on the road"...virtually.
I hope you are all finding the time to appreciate the silver linings of social distancing, whatever they may be for your family, and I leave you with a special message from Drs. Bonnie Klein-Tasman and Karen Levine: Don't forget to be kind to yourselves when the frustrations build, and congratulate yourselves as you cheer on your children for every small accomplishment.
Please continue to follow all the guidelines to keep your family safe and healthy.
I look forward to seeing you online!
**Families who have registered for the convention will be contacted via email with additional information about refunds and hotel reservations.