Hello everyone!
Hope you’re all enjoying a beautiful (though incredibly hot) summer! It’s hard to believe it’s almost back to school time here in Florida! Here at the WSA, we’ve been busy as usual. I wanted to share a few important highlights with you!
Earlier this month, we welcomed Karina Botello as our new Donor Services Coordinator. She has over ten years of experience in Advancement, specializing in donor prospecting, research, gift processing, event planning, reporting, and Salesforce management. Karina, who is fluent in Spanish, is passionate about supporting mission-driven work through thoughtful, detail-oriented fundraising operations. She lives with her family in Los Angeles, and we’re thrilled to have her on our team! If you happen to speak with Karina, please help us give her a warm WSA welcome!
Death, loss, and grief are never easy topics. This year, we’ve begun to focus on these tough topics - and to create support around them. We’ve witnessed the loss of quite a number of individuals with WS recently, many of them suddenly. Conversations began among the WSA, the WS clinical consortium (including The Armellino Center of Excellence for Williams Syndrome (ACE for WS) and the other clinics), CReWS (the WSA’s Collaborative Registry on Williams Syndrome) and the AGF Grant around how we could best support families who have lost loved ones with WS, and how to further study the causes. The WSA is formalizing a multi-step approach to this topic. Though some of these pieces are still in development, I wanted to share the progress that has been made.
- Support when the unthinkable occurs: The WSA currently has some incredible parents who have lost loved ones with WS leading a support group for others who experience that same loss. They’ve shared that they want their loss to serve a purpose and that they will always be a part of the WS community - and we couldn’t agree more! We are also creating a Grief Outreach Team - a trained group of bereaved parents who will reach out to offer support when a family loses a loved one with WS. Training and support for that outreach team will be provided by grief support professionals.
- Documenting data around death: Currently, our registry is focused only on gathering data related to the life of someone with Williams syndrome. The WS Clinical Consortium and CReWS are developing a “Legacy Survey," which will help gather data related to the death of someone with WS. Data is the most powerful tool we have in research. The more data we have, the deeper our knowledge becomes. A number of families who have lost loved ones with WS are currently helping us test this survey, before we launch it to a broader audience. We intend to capture data about any cause of death - not just sudden cardiac death. This will also provide more robust data around the lifespan of individuals with WS.
- Supporting and funding research: The AGF Grant, through the WSA, is now funding Dr. Mark Levin’s research at ACE on sudden cardiac death. As part of the research conference ACE is hosting this fall (in partnership with the WSA), there will be discussions around some of these cases. The WSA has reached out to a number of families to participate and to request permission to contact the clinicians who were involved. The AGF Grant has also been reaching out to families. If you know a family who would want to be included in this discussion, please email me at sarah@williams-syndrome.org.
- Advanced planning tools: No one expects to lose their loved one suddenly. The WSA is creating a process to support parents in planning for the future, when you’re not facing the unthinkable. We will provide tools to help you document: 1) thoughts and wishes for your child around medical treatment should an emergency arise, 2) indicating whether or not you would want our grief outreach team to reach out to you in the event that you lose your child/adult with WS, 3) giving us permission to send the WSA CReWS survey to collect information around the death of your loved one, and 4) choose whether or not to donate your loved one’s tissue/organs/heart for research. We’ll share more information about this tool in the future.
- A way to pay tribute: Our community is one of big feelings - joy, grief, love, loss, and togetherness. When someone in our community experiences a loss, we all truly grieve with them. Many families ask us to pay tribute to their loved one, share an obituary, or create a way others can give to the WSA in memory of their loved one. We’re finalizing a Tribute section of the WSA website where everyone who has passed can have a page dedicated to their memory. Watch for the launch of this section in August.
Losing a loved one with WS is truly unimaginable. Unfortunately, there are many families in our community who have experienced this heartbreaking loss. Our goal is to surround those families with support and love, offer guidance and planning for those of us with family members affected by WS, continue funding research on sudden cardiac death, and honor the memory of those we've lost. We are deeply grateful to our partners in the WS Clinical Consortium, the AGF Grant, and the incredible families who continue to support one another through their grief.
If you’re wondering how you can make an impact right now, or how you can contribute toward moving research on Williams syndrome forward, if you have a child with Williams syndrome, please take the time to join our registry. Data makes a HUGE difference.
If you, or someone you know, would like to learn more about any of these initiatives, please reach out to me at sarah@williams-syndrome.org.
Take care everyone,
Sarah