A licensed clinical social worker, Case first became aware of the Virginia Down Syndrome Association (formerly Down Syndrome Association of Greater Richmond) a little over nine years ago, when she learned that her third son, Brayden, would “most likely” be born with Down Syndrome.
Case admits that when she was pregnant, she wasn’t quite ready to ask for help or seek guidance from other parents. As soon as Brayden was born,
though, she knew she wanted to be part of a community that understood the blessings and challenges of this diagnosis.
“I got connected to a local mom’s group and those people really became my people for the next several years,” says Case.
When Case saw the announcement in 2021 that the organization’s executive director was retiring, she “had a moment of pause.”
“I was in a place in my career where I was trying to figure out what to do next, what my next challenge would be. This felt like the right step,” says Case.
As executive director of the Virginia Down Syndrome Association (VDSA), Case oversees the services and programs provided for families located in all central Virginia, east to Williamsburg and Newport News, down south to the state line, west to the Shenandoah Valley and north to Fredericksburg. These services include everything from helping parents navigate resources to find the best pediatrician or dentist to a “first call program” which Case is particularly proud of.
“The first call program is for when families receive that diagnosis, it could be prenatal or at birth,” explains Case. “We partner with hospitals, Labor and Delivery and OBGYN offices so they know we exist, and they can be educated on the best way to provide that diagnosis to a family in a way that is not
scary or overwhelming.”
The first call is just the beginning of the services VDSA provides.
“Something I really like is we serve the entire lifespan,” says Case. “A lot of people don’t realize that even though the Down Syndrome diagnosis has been
around a long time, just 40 years ago individuals with Down Syndrome had an average life expectancy of 25. I often think about that statistic. My son is nine, I can’t imagine that his life would be more than a third over.”
Today, thanks to medical advancements and more support systems in place for individuals with Down Syndrome and their families, the average life
expectancy is in the 60s. But Case isn’t satisfied with that data.
“There is still a high underemployment and unemployment rate for individuals with Down Syndrome,” says Case. “There’s also increased social isolation into the adult years. Those are things we want to see change. I just imagine—what can it be in 40 more years?”