2020-11-16T09:11:08-08:00 2019-12-31 743216978 NAWROCKI SMITH LLP 290 BROADHOLLOW RD STE 115E MELVILLE NY 11747 990 2019-01-01 161569293 CARDIO-FACIO-CUTANEOUS INTERNATIONAL CO Nawrocki Smith LLP CARD 8720 W Bent Tree Drive Peoria AZ 85383 Jennifer Iacobelli President 2020-11-16 true DAVID TELLIER P01359581 6317569500 2019 2021-01-29 14:40:06Z 8720 W Bent Tree Drive Peoria AZ 85383 241652 false X www.cfcsyndrome.org X NY TO IMPROVE THE QUALITY OF LIFE THROUGH FAMILY SUPPORT, RESEARCH, AND EDUCATION. 11 11 2 15 0 119647 241297 0 1111 355 14197 0 134955 241652 0 0 57682 100809 0 29761 59405 181225 117087 282034 17868 -40382 692222 606840 45000 0 647222 606840 WE ARE A RARE DISEASE ADVOCACY ORGANIZATON THAT PROVIDES EDUCATION AND LITERATURE TO FAMILIES AND AGENCIES WHO ASSIST CHILDREN BORN WITH THE RARE CARDIO-FACIO-CUTANEOUS SYNDROME. WE HOST A WEBSITE, BIENNIAL INTERNATIONAL FAMILY CONFERENCES, AND A PRIVATE FAMILY COMPUTER LISTSERVE AND FACEBOOK PAGE. WE SUPPORT RESEARCHERS AND THEIR PROJECTS SO THE FAMILIES CAN CONTINUE TO LEARN MORE ABOUT THIS RARE CONDITION AND HOPEFULLY OBTAIN TREATMENTS FOR THEIR AFFECTED FAMILY MEMBER(S). false false 136093 FAMILY SERVICES PROGRAM: INCLUDES A ROBUST WEBSITE WHICH ALLOWS USERS TO ACCESS THE LATEST RESOURCES; FAMILY OUTREACH SERVICES TO ENCOURAGE AFFECTED FAMILIES TO CONNECT; AN EMAIL LISTSERV AND PRIVATE FACEBOOK GROUP WHERE FAMILIES SUPPORT ONE ANOTHER, AS WELL AS PERSONAL PHONE CALLS TO FAMILIES IN CRISIS AND TO OFFER NON-MEDICAL SUPPORT WHEN NEEDED. TRAINED VOLUNTEER FAMILY LIAISONS ARE OFFERED TO NEW FAMILIES TO PROVIDE SUPPORT AND INFORMATION. NEW FAMILIES THAT REGISTER ON THE CFC INTERNATIONAL WEBSITE RECEIVE A WELCOME PACKET, INCLUDING A LETTER, BROCHURE AND GUIDE TO CFC SYNDROME. NEWSLETTERS ARE MAILED/EMAILED TO OVER 1600 FAMILIES AND SUPPORTERS. WE MAINTAIN A WEB PRESENCE AT WWW.CFCSYNDROME.ORG. WE HELD A FAMILY CONFERENCE IN TAMPA, FLORIDA 2019. THIS EVENT PROVIDED FAMILIES ATTENDING FROM ACROSS THE WORLD TO CONNECT WITH EACH OTHER FOR SUPPORT, ACCESS MEDICAL EXPERTS FOR INFORMATION, LECTURES AND CONSULTATION, AND TO PARTICIPATE IN THERAPEUTIC ACTIVITIES FOR CAREGIVERS AND SIBLINGS. ATTENDEES REPORTED NUMEROUS BENEFITS OF ATTENDING THE CONFERENCE AND APPRECIATED THE OPPORTUNITY TO NETWORK WITH OTHER AFFECTED FAMILIES AS WELL AS MEDICAL EXPERTI, AND RESEARCHERS. THE STEPHANIE KOHLER FUND PROVIDED SCHOLARSHIPS TO 7 FAMILIES TO ATTEND THE CONFERENCE. 136093 true true false false false false false false false false true false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false false true 0 0 false 2 true false false false false false false false 0 false false false false false false false X 11 11 false false false false false false false true true false false true false false false false false false NY X Jennifer Iacobelli 6317569500 290 Broadhollow Road Suite 115E Melville NY 11747 Tuesdi Dyer Executive Dir. 5.00 0.00 X X 77812 0 0 Jeff Kohler Treasurer 5.00 0.00 X X 0 0 0 Libby Airhart Secretary 5.00 0.00 X X 0 0 0 Cara Borian Board Member 5.00 0.00 X 0 0 0 Glenda Hux Board Member 5.00 0.00 X 0 0 0 Leslie Rogers Research Chair 5.00 0.00 X 0 0 0 Richard Boyce Executive Dir. 25.00 0.00 X X 0 0 0 Pilar Magoulas Board Member 5.00 0.00 X 0 0 0 Betsy Rosenbaum Vice President 25.00 0.00 X X 0 0 0 CJ Mortimer Board Member 5.00 0.00 X 0 0 0 Jennifer Iacobelli President 5.00 0.00 X 0 0 0 77812 0 false false false 0 241297 241297 0 355 355 0 0 0 0 0 0 0 0 241652 355 0 0 0 0 77812 77812 0 15571 15571 0 0 7426 7426 0 0 0 0 0 0 0 1919 1919 1241 749 492 0 0 0 0 0 0 0 0 0 2272 2272 2019 Tampa Conference 101072 101072 Seizure Research 30000 30000 Kinley Classic 26332 26332 Dues & Memberships 4760 4760 13629 4272 5928 3429 282034 136093 116180 29761 690649 606840 0 0 0 0 0 0 0 0 4695 4695 1573 0 0 0 0 0 0 692222 606840 45000 45000 0 X 535000 512486 112222 94354 647222 606840 692222 606840 -40382 X false false false X 80339 75342 161192 119647 241297 677817 30084 24955 86661 14197 155897 0 0 0 110423 100297 247853 133844 241297 833714 0 0 833714 1346 1422 197 1112 355 4432 0 1346 1422 197 1112 355 4432 0 0 111769 101719 248050 134956 241652 838146 0.99470 0.99160 0.00530 0.00840 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4695 4695 Form 990, Part VI, Line 11b: Form 990 Review Process The organization circulates the 990 to the board of directors for comment prior to the filing of the form. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts 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, Line 19: Other Organization Documents Publicly Available All governing documents are available to the public upon request.