2025-11-17T08:41:14-08:00 2024-12-31 990 2024-01-01 161569293 CARDIO-FACIO-CUTANEOUS INTERNATIONAL CARD 5 Wexford Court St James NY 11780 Alexis Nash President 2025-11-17 true 2024 2025-03-06 01:10:19Z 5 Wexford Court St James NY 11780 207154 false X www.cfcsyndrome.org X NY TO IMPROVE THE QUALITY OF LIFE THROUGH FAMILY SUPPORT, RESEARCH, AND EDUCATION. 7 7 4 29 0 139893 101341 58064 9403 12187 35234 35514 184530 207106 0 0 137522 171876 0 0 58963 229164 196485 401040 -11955 -193934 534730 344835 1531 0 533199 344835 CFC International's mission is to improve the quality of life for individuals with Cardiofaciocutaneous Syndrome and their families through support, research, awareness, and education. Our vision is to advance understanding and treatment of CFC syndrome. We achieve our mission and seek our vision by providing comprehensive educational materials, a robust website, condition management webinars, and disseminate vital information - like peer-reviewed treatment guidelines - to diagnosed patients and caregivers. We improve access to experts in the management of CFC syndrome by hosting a biennial medical conference as well as at least one Rasopathy Clinic care event per year. Our patient families convene for support in multiple ways: through a Facebook support group, six to eight virtual support groups per month, and regional family meetups. Through our Medical Advisory Board, we strive to ensure that healthcare professionals have immediate access to the most current information, facilitatin false false 208341 We are a patient advocacy organization that supports families whose children have been diagnosed with Cardio-Facio-Cutaneous Syndrome (CFC syndrome). We offer education and resources through email, webinars, social media, published materials, and a website to support families as they manage this condition. We also provide financial assistance to families struggling with medical costs. Our organization hosts a family medical conference every two years and at least one clinical care weekend each year at a Rasopathy Clinic. These events allow families to connect and learn from medical professionals and researchers. We also provide scholarships to help families attend these events. Additionally, we run a private Facebook page, virtual support groups, and a monthly newsletter with helpful information and peer support. We organize family meetups around the world so families can form connections with one another. Families can apply for travel stipends to help with the costs of attending these meetups.We fund important research on CFC syndrome through a grant process and support researchers who need help finding patients for their studies. Our goal is to keep families informed about new treatments and therapies, giving hope to those affected by this rare condition and ensuring they receive the best care and support possible. 208341 true true false false false false false false false false true false false false false false false false false false false false false false true false false false false true false false false false false false false false false false false false false false false false false true 0 0 false 4 true false false false false false false false 0 false false false false false false false X 7 7 false false false false false false false true true false false true true true true false false false false false NY X Darin Iacobelli 6317569500 5 Wexford Court St James NY 11780 Troy Greisen Former Executive Director 5.00 0.00 70833 0 0 Tuesdi Dyer Executive Dir. 5.00 0.00 X X 19624 0 0 Alexis Nash President 5.00 0.00 X X 0 0 0 Jeff Kohler Past President 5.00 0.00 X 0 0 0 Richard Boyce Board Member 5.00 0.00 X 0 0 0 Darin Iacobelli Treasurer 5.00 0.00 X X 0 0 0 Vidya Ramabadran Board Member 5.00 0.00 X 0 0 0 Glenda Hux Secretary 5.00 0.00 X X 0 0 0 Pilar Magoulas Vice President 5.00 0.00 X 0 0 0 90457 0 true false false 0 101341 101341 Medical Conference 58064 58064 58064 12187 12187 0 0 0 0 35562 48 35514 35514 0 0 0 207106 12187 93578 0 0 0 0 19624 19624 70833 70833 41373 41373 0 5802 5802 34244 34244 0 0 1343 1343 0 0 1927 1927 5749 5749 137 137 7408 7408 0 0 0 17434 17434 0 0 0 0 0 2541 2541 Medical Conference 160692 160692 Family Ambassador Program 21496 21496 Outreach Materials 5950 5950 Emergency Fund 1078 1078 3409 1691 1718 401040 208341 192699 0 287730 190201 242000 154634 0 0 0 0 0 0 0 4695 4695 0 0 0 0 0 5000 0 534730 344835 1531 1531 0 X 411909 125016 121290 219819 533199 344835 534730 344835 -193934 5570 X false false false X 133459 149749 111608 139893 101341 636050 10481 97453 128173 84293 93626 414026 0 0 0 143940 247202 239781 224186 194967 1050076 0 0 1050076 2468 58 85 9403 12187 24201 0 2468 58 85 9403 12187 24201 0 0 146408 247260 239866 233589 207154 1074277 0.97750 0.98880 0.02250 0.01120 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4695 4695 false Lillian's Legacy 35562 35562 35562 35562 35562 false false false false false false false false false Troy Greisen Former Executive Director 70833 70833 Form 990, Part VI, Section B, Line 11b The organization circulates the 990 to the board of directors for comment prior to the filing of the form. Form 990, Part VI, Section B, Line 12c THE ORGANIZATION REQUIRED OFFICERS, BOARD OF DIRECTIONS AND EXECUTIVE DIRECTOR TO ANNUALLY VERIFY THAT THEY HAVE READ THE CONFLICT OF INTEREST POLICY AND TO SIGN A CONFLICT OF INTEREST DISCLOSURE STATEMENT INDICATING ANY CONFLICTS. Form 990, Part VI, Section C, Line 19 All governing documents are available to the public upon request.