Kara Kilroy

About Kara Kilroy

Kara's son was diagnosed with Jansen de Vries Syndrome in November 2017. At the time, her family was given very little information beyond a single article about the disorder, an experience that underscored how isolating a rare diagnosis can feel.

She helped build connections among families so that those receiving a diagnosis after her family could find information, encouragement, and a welcoming community sooner.

Kara brings experience in school counseling and mental health counseling to her work with the foundation. That perspective continues to shape its family-centered, supportive approach.