Families in our community
Households who have chosen to join the JdVS map
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
Our collective impact
Growing hope, together
These milestones reflect the community and resources being built by families, advocates, and supporters.
States represented
Growing the map, one household at a time
Family stories shared
Experiences that help others feel less alone
Resources available
Practical guidance for families and professionals
Amount raised
A verified total will be shared here soon
How the Foundation Helps
These are some of the main ways the foundation supports families and strengthens the broader JdVS community.
Family Connection
Connecting newly diagnosed families with stories, peer support, online communities, and the growing community map.
Education and Resources
Maintaining practical guides, Genetics 101 content, clinician resources, and a clearer starting point for families who need answers quickly.
Research Support
Encouraging participation in research pathways, sharing publications, and supporting opportunities that expand understanding of JdVS and PPM1D.
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.
Read Kara's full bio
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.
Read Rachel's full bio
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.
Read Marinda's full bio
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.
Read Kerry's full bio
Transparency and Contact
Families, donors, and collaborators should have a clear path to both financial information and direct contact.
Financial Reports
Review the foundation's financial information and public-facing transparency materials on the live site.
View financial reportsContact the Foundation
Reach out about collaboration, sponsorship, donations, community questions, or other ways to get involved.
Open the contact page