2021-11-15T09:06:24-08:00 2020-12-31 990 2020-01-01 161569293 CARDIO-FACIO-CUTANEOUS INTERNATIONAL CARD 8720 W Bent Tree Drive Peoria AZ 85383 Betsy Rosenbaum President 2021-11-15 Betsy Rosenbaum 999009999 2 AAL1 IAL1 FAL1 2020 2022-09-23 18:48:47Z 8720 W Bent Tree Drive Peoria AZ 85383 146408 false X www.cfcsyndrome.org X NY TO IMPROVE THE QUALITY OF LIFE THROUGH FAMILY SUPPORT, RESEARCH, AND EDUCATION. 13 13 3 15 0 241297 133459 0 355 2468 9759 241652 145686 0 0 100809 93150 0 0 181225 56558 282034 149708 -40382 -4022 606840 602818 0 606840 602818 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, BINNIAL 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 46054 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 SUGARLAND, TEXAS IN JUNE 2017. 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. 46054 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 3 true false false false false false false false 0 false false false false false false false X 13 13 false false false false false false false true true false false true false false false false false false NY X Jennifer Iacobelli 6317569500 100 Motor Parkway STE 580 Hauppauge NY 11788 Tuesdi Dyer Executive Dir. 5.00 0.00 X X 79000 0 0 Libby Airhart Outgoing Secret 5.00 0.00 X X 6950 0 0 Beth McHale Executive Assis 5.00 0.00 X 580 0 0 Jeff Kohler Treasurer 5.00 0.00 X X 0 0 0 Cara Borian Board Member 5.00 0.00 X 0 0 0 Richard Boyce Board Member 5.00 0.00 X 0 0 0 Les Rogers Board Member 5.00 0.00 X 0 0 0 Judy Doyle Board Member 5.00 0.00 X 0 0 0 Glenda Hux Board Member 5.00 0.00 X 0 0 0 Pilar Magoulas Board Member 0.00 0.00 X 0 0 0 Betsy Rosenbaum President 0.00 0.00 X 0 0 0 CJ Mortimer Secretary 0.00 0.00 X 0 0 0 Jennifer Iacobelli Outgoing Presid 5.00 0.00 X 0 0 0 86530 0 false false false 0 20110 113349 133459 0 2468 2468 0 0 0 0 10481 722 9759 9759 0 0 0 145686 12227 0 0 0 0 86530 86530 0 0 0 0 6620 6620 0 0 0 0 0 0 125 125 329 329 0 588 588 0 0 448 448 0 0 0 0 0 2203 2203 Research Expense 30000 30000 Conference 10198 10198 E Tapestry 3063 3063 Office Supplies 2218 2218 7386 5408 1978 149708 46054 103654 0 606840 602818 0 0 0 0 0 0 0 0 4695 4695 0 0 0 0 0 0 606840 602818 0 0 X 512486 508464 94354 94354 606840 602818 606840 602818 -4022 X false false false X 75342 161192 119647 241297 133459 730937 24955 86661 14197 10481 136294 0 0 0 100297 247853 133844 241297 143940 867231 0 0 867231 1422 197 1112 355 2468 5554 0 1422 197 1112 355 2468 5554 0 0 101719 248050 134956 241652 146408 872785 0.99360 0.00640 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.