support. research. awareness. Education.
2025 LilliAn’s Legacy research grant RFP is OPEN
Application Deadline:
August 31, 2025
Support our FAMILIES
“Remington’s impact on those around him is undeniable, and his bright spirit leaves a lasting impression wherever he goes!”
— Kathryn, Remington’s Mom
Registration for the Kinley Klassic & Kami Too Golf Tournament is OPEN!
Our Mission
To improve the quality of life for individuals with Cardiofaciocutaneous syndrome and their families through support, research, awareness and education.
OUR VISION
To advance understanding and treatment of CFC syndrome.
To provide support as needed by people affected by CFC syndrome through outreach, education and information sharing.
To ensure that physicians have ready access to the latest information to enable accurate diagnosis and proper symptom treatment.
To maintain and expand a registry of individuals with CFC syndrome.
To foster and facilitate medical research on CFC syndrome including development of appropriate treatments.
To maintain and grow a broad base of funds needed to expand our mission and goals.
To provide sustainability of the organization through continuity and growth.
To support a collaborative relationship among the conditions of the RAS pathway.