I received a Bachelor of Science in Biology from Lafayette College in Easton, PA in 1986. Even though I am passionate about science, I couldn’t envision a career as a doctor or a researcher. So, because I also love the performing arts, I pivoted and went to graduate school at New York University for a Masters in Arts in nonprofit performing arts administration. A big part of that program was fundraising, and I’ve been fundraising for worthy causes for over 30 years.

 

While I don’t use much of my hard-earned biology education in my career as a theater manager, I use a lot of it as a mother. My first child was born in 2000, and I was glad to have that science background as I adjusted to the biggest change in my life: parenthood.

 

My second child Audrey, who is 18 years old, received a WDR-26 diagnosis two years ago. We live in Princeton, NJ, and Audrey is followed by several exceptional doctors at Children’s Hospital of Philadelphia (CHOP). Imagine our surprise when we learned that Audrey’s rare genetic difference was first identified by geneticists at CHOP!

 

That November day in 2021 when we received the diagnosis, I was told that there is a Facebook group of other parents of children with Skraban-Deardorff Syndrome. Naturally, I joined the group right away (even though I’m not very active on social media). After sixteen years of not having any other parents with whom I could discuss our many medical and developmental challenges, I was thrilled to finally have a support network.

 

One of the very first posts I read in the Facebook group was, “Does anyone know how to start a nonprofit organization? We’d like to start one to raise money for research.” I immediately responded, “Well, as a matter of fact, I do!”

 

Since that time, I have been honored to work with very talented parents and medical professionals as we incorporated the Skraban-Deardorff Syndrome Foundation, developed a website, launched a podcast and a newsletter, raised over $70,000 to date, and so much more. I am in awe of the passionate, dedicated, intelligent and loving parents of the gorgeous SKDEAS kids and am grateful for their partnership as we navigate this new, unexpected and difficult terrain. Through it all, we keep smiling!