My First Six Months as Executive Director 

I hope that this letter finds you and your families safe and healthy. After being in my new position as Executive Director for six months, I wanted to update you. As you may know, the Trisomy 18 Foundation announced this past winter that Victoria Miller would be retiring as Executive Director, and I would be taking over effective February 1, 2020. (See the announcement HERE). I was ready for the challenge and set to work filling out forms, mailing in paperwork and completing the necessary logistics to transfer our principal office from Virginia to my home state of Michigan. 

We had donations coming in steadily and annual events planned, so financially, the Trisomy 18 Foundation was solid. I, as the new Executive Director, was ready to expand our services and continue funding research. Then COVID-19 hit, and everything came to a screeching halt. Donations trickled down to nearly nothing, many annual fundraisers were canceled, and the money we depend on to keep our programs and services running came to a standstill. 

We all know that many businesses are struggling, and those businesses include nonprofits. I do not like asking for money, but I realized that if I am going to serve the families that are counting on me, I have to get out of my comfort zone and start asking. So here I am today, asking for help. 

Part of what I do as Executive Director is moderate our private Facebook group called Parent’s Connect. It is a group for mothers and fathers whose babies have been diagnosed with Trisomy 18. As of July 30, 2020, we have 1,635 parents in the group. The Trisomy 18 Foundation provides this safe place where these parents can share stories, ask questions, and post pictures of their babies, some still fighting, and some gone too soon. The parents in the group who are pregnant support each other and talk about their fears of the future and whether they will get to see their baby alive. This group is just one of the many services that the Trisomy 18 Foundation provides. 

Since taking over as Executive Director,  I have personally talked to over 147 parents who recently found out that their unborn baby has Trisomy 18. These parents’ worlds came crashing down, and we want to make sure we are there to continue to support them and those that come after them. We want to make sure we can continue to fund research, so our mission of making Trisomy 18 a treatable and preventable condition can become a reality. I know that COVID-19 has changed the world as we know it. It isn’t going to go away anytime soon and neither is Trisomy 18. It is a scary time for everyone, and imagine adding a Trisomy 18 diagnosis of a much loved and wanted baby on top of it. 
Can you help?

Kristine Shaughnessy
Executive Director
Trisomy 18 Foundation
kshaughnessy@trisomy18.org
https://trisomy18.org/