Supporting Research, Advocacy, and Community Impact
The mission of the KdVS Foundation is to improve the lives of individuals and families affected by Koolen-de Vries syndrome through research, advocacy, education, support services, and meaningful community connection. As the Foundation continues to grow, a thoughtful and transparent grant process helps ensure that resources are invested strategically, responsibly, and in ways that create measurable impact for the KDVS community.
Research & Funding Priorities
The KdVS Foundation seeks to support innovative, early-stage, translational, and patient-centered initiatives that advance scientific understanding and improve outcomes for individuals living with KDVS. The Foundation is especially interested in projects that demonstrate strong scientific merit, collaboration, measurable milestones, and long-term therapeutic potential.
Priority areas include:
- Advancing understanding of KANSL1 biology and KDVS mechanisms
- Exploring therapeutic development and treatment pathways
- Supporting translational and clinical research
- Strengthening patient registries and natural history studies
- Developing biomarkers and clinical trial readiness
- Improving quality of life and functional outcomes
- Supporting educational, behavioral, and family-centered interventions
- Encouraging collaboration and open scientific exchange
While earlier research efforts focused primarily on defining and characterizing KDVS, the field is now entering a new phase centered on therapeutics, translational science, and cure-oriented research. Through intentional funding cycles and strategic investment, the Foundation seeks to help move discoveries from the laboratory toward meaningful clinical impact.
Proposal Evaluation Criteria
Grant proposals are evaluated based on:
- Scientific merit and rigor
- Innovation and creativity
- Feasibility and readiness
- Potential patient and family impact
- Collaboration and data sharing
- Long-term translational potential
- Responsible stewardship of funding
Grant recipients are expected to provide progress updates every six months to the Foundation’s Medical Advisory Board to promote transparency, accountability, and shared learning across the KDVS research community. We will provide a template progress report and continued funding payments or dispersals could be delayed if the reports are not received in a timely manner.
Review & Approval Process
The KdVS Foundation Board of Directors is responsible for reviewing and making all final decisions regarding grant funding requests. Proposals are evaluated based on mission alignment, measurable impact, feasibility, financial stewardship, collaboration opportunities, and long-term benefit to individuals and families affected by KdVS.
Submission Timeline
Grant applications are accepted on a rolling basis throughout the year; however, applicants are strongly encouraged to submit proposals by November 1 for primary consideration during the Foundation’s annual funding review cycle. The majority of grant allocations for the upcoming calendar year are typically determined and awarded by the end of November. Projects submitted after November 1 may still be considered based on available funding, emerging research opportunities, and strategic priorities identified by the KdVS Foundation and its Medical Advisory Board. Please submit to Ashley Point, President, KdVS Foundation at [email protected]. Feel free to contact Ashley with any questions.
