Jansen de Vries Syndrome Foundation
Raising hope, together.
The foundation exists to support families, strengthen community, and encourage meaningful research.
Our Mission
The Jansen de Vries Syndrome Foundation is a nonprofit, tax-exempt organization as defined in section 501(c)(3) of the Internal Revenue Code. Contributions to the foundation are tax-deductible and support our mission of providing community, resources, and hope to families touched by JdVS.
We work to raise awareness of this rare genetic condition, connect families with one another, and support researchers and medical professionals working to better understand the PPM1D mutation and its impact.
Mission Focus
Support families
Share trusted resources
Grow awareness
Back research
Board Members
The foundation is led by parents and advocates who know firsthand how powerful connection and information can be after diagnosis.
Kara Kilroy
President
When Kara's son was diagnosed in November 2017, she was given very little information beyond a single article about the disorder. Frustrated by isolation and the lack of guidance, she set out to connect with other families and help create a more welcoming path for those diagnosed after her family.
Kara's background in school counseling and mental health counseling continues to shape the supportive spirit of the foundation.
Rachel Horne
Vice President and Secretary
Rachel's son was diagnosed in August 2017 in Charleston, South Carolina. What began as uncertainty and unanswered questions eventually became a deep commitment to helping other families find support and hope sooner.
Her background in early childhood education and her lived experience as Wells' mom continue to inform the foundation's family-centered work.
Marinda du Toit
Treasurer
Marinda's son Daniel was connected with Dr. Cynthia Curry long before JdVS had a name. When follow-up testing in 2017 finally led to a diagnosis, she was able to help build the small but growing network of families facing the same condition.
Her nursing background and leadership experience strengthen the foundation's practical and compassionate approach.
Kerry Smith
International Ambassador, United Kingdom
Kerry's son was diagnosed in 2020 through the 100000 Genome Project in the United Kingdom. The foundation community gave her support after diagnosis, and she has since worked to strengthen awareness and connection for families outside the United States.
Her experience in social work, education, and disability services helps extend the community's reach internationally.
