Kara Kilroy Headshot

Kara Kilroy


When Kara’s son was diagnosed with JdVS in November of 2017 she was handed the one article published on the disorder, a mere 9 months prior to her son’s diagnosis, and given little else. Without a medical background and frustrated by the lack of information and isolation she experienced during this painful time, she set out to connect with others and she committed to making a difference within the JdVS community. Fortunately her geneticist at Boston Children’s Hospital remained involved in her son’s care and called within a few months to share the name of Dr. Cynthia Curry, a researcher and practitioner who diagnosed the first cases of JdVS within the United States. A call with Dr. Curry set off a series of connections across the United States and developed the community of support we have today. The JdVS Foundation was created to provide families with a welcoming community of support during an incredibly isolating and confusing time. 

Kara has Masters degrees in School Counseling and Mental Health Counseling. She spent many years working as a high school counselor and more recently transitioned to private practice, serving the mental health needs of children and adolescents. When she is not advocating on behalf of the JdVS community or working, Kara enjoys spending time outdoors with her family, cooking, reading and planning her next home improvement project!