2017-04-21T07:20:49-07:00 2016-12-31 NAWROCKI SMITH LLP 290 BROADHOLLOW RD STE 115E MELVILLE NY 117474822 990 2016-01-01 161569293 CARDIO-FACIO-CUTANEOUS INTERNATIONAL CARD 6077729666 183 BROWN ROAD VESTAL NY 13850 Jennifer Iacobelli President 2017-04-21 true DAVID TELLIER P01359581 6317569500 2016 2021-01-29 14:40:06Z 105948 false false X www.cfcsyndrome.org X NY TO IMPROVE THE QUALITY OF LIFE THROUGH FAMILY SUPPORT, RESEARCH, AND EDUCATION. 9 8 1 15 0 110423 75342 0 1346 1422 51997 24955 163766 101719 0 0 27458 28909 0 807 16618 27458 45527 136308 56192 499088 555993 699 1412 498389 554581 X 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 38024 FAMILY SERVICES PROGRAM INCLUDES A ROBUST WEBSITE WHICH ALLOWS USERS TO ACCESS THE LATEST RESOURCES; FAMILY OUTREACH SERVICES TO ENCOURAGE AFFECTED FAMILIES TO GET TOGETHER; A LISTSERV AND PRIVATE FACEBOOK SITE WHERE FAMILIES SUPPORTONE ANOTHER, AS WELL AS PERSONAL PHONE CALLS TO FAMILIES IN CRISIS AND TO OFFER NON-MEDICAL SUPPORT WHEN NEEDED.NEWSLETTERS ARE MAILED OUT TO OVER 400 FAMILIES AND SUPPORTERS WITHIN THE USA. WE MAINTAIN A WEB PRESENCE AT WWW.CFCSYNDROME.ORG. WE MODERATE A GROUP FORUM AND HAVE A NETWORKING PROGRAM THROUGH OUR PRIVATE LIST SERVE AND FACEBOOK SITE. IN ADDITION, AFFECTED FAMILIES CONTACT THE ORGANIZATION VIA EMAIL AND TELEPHONE AND RECEIVE SUPPORT AND INFORMATION BASED ON THEIR NEEDS. WE SHIPPED OUT ALL NEW FAMILIES BROCHURES AND GUIDES TO CFC SYNDROME TO OUR FAMILIES WITHIN THE USA. WE PROVIDED ELECTRONIC COPIES TO OUR FAMILIES OUTSIDE OF THE USA. THESE FUNCTIONS PROVIDE A FORUM FOR AFFECTED INDIVIDUALS, THEIR FAMILIES, CAREGIVERS AND OTHERS AFFECTED BY SOMEONE LIVING WITH CFC SYNDROME TO RECEIVE EMOTIONAL SUPPORT AND TO SHARE INFORMATION. THESE FUNCTIONS ALSO HELP PROMOTE AWARENESS AND EDUCATE THE PUBLIC AND THE MEDICAL COMMUNITY ABOUT CFC SYNDROME.THE STEPHANIE KOHLER FUND FOR BI-ANNUAL CONFERENCE SCHOLARSHIPS WILL BE USED EXCLUSIVELY FOR TRAVEL STIPENDS FOR NEW CFC FAMILIES WHO WOULD LIKE TO ATTEND THE FAMILY CONFERENCES SO THEY ARE ABLE TO MEET WITH CFC EXPERTS AND OTHER FAMILIES.PURCHASE OF ETAPESTRY DATABASE HELPED SECURE OUR FAMILY DATA INFORMATION. FAMILY DATA AND DONOR DATA WAS SWITCHED OVER FROM 4 DIFFERENT DATA BASES INTO ONE PROFESSIONAL COMPANY PROGRAM. WE PURCHASED ENROLLEMENT WITH ETAPESTRY DATABASE THROGUH BLACKBAUD AND NOW HAVE ONE CENTRAL LOCATION TO LOOK UP INFORMATION. THIS HAS GREATLY IMPROVED OUR OUTREACH TO OUR FAMILIES AND DONORS WHO SUPPORT OUR MISSION. NEWSLETTERS AND CAMPAIGNS ARE ALL NOW LAUNCHED FROM ONE CENTRAL SOURCE. 2500 Research We financially supported The Million Dollar Bike Ride. This fundraising bike ride is hosted through the Center for Orphan Disease Research and Therapy (CODRT) at University of Pennsylvania. Your organization has to be chosen to participate and raise money that CODRT will then match for research projects. 40524 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 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 1 true false false false false false false false false 0 false false false false false false false false false false X 9 8 false false false false false false false false false false false true false false false false false false false false NY X Kayla Stein 2486818212 7053 Deerwood Trail West Bloomfield MI 483232084 Brenda Conger Executive Dir. 25.00 0.00 X X 26500 0 382 Jennifer Iacobelli President 2.00 0.00 X X 0 0 0 Molly Santa Cruz Vice President 1.00 0.00 X X 0 0 0 Shelly Greenhaw Secretary 2.00 0.00 X X 0 0 0 Kayla Stein Treasurer 5.00 0.00 X X 0 0 0 Cara Borian Board Member 1.00 0.00 X 0 0 0 Luba Djurdjinovic Board Member 1.00 0.00 X 0 0 0 Pilar Magoulas Board Member 1.00 0.00 X 0 0 0 Leslie Rogers Board member 2.00 0.00 X 0 0 0 26500 382 0 false false false 0 2750 72592 75342 0 1422 1422 0 0 0 0 29184 2750 4229 24955 0 0 0 101719 1422 0 0 0 0 26500 26500 0 0 0 382 382 2027 2027 0 0 0 0 0 0 0 254 254 1767 1759 8 476 476 0 0 0 0 2642 2642 0 0 0 1737 1737 Charitable Contributions 2750 2500 250 Printing and Publications 1514 1514 MISCELLANEOUS fees 1459 689 770 STAFF DEVELOPMENT 1182 567 615 2837 2808 29 45527 40524 4196 807 498874 554420 0 0 0 0 0 0 0 0 4695 3122 214 1573 0 0 0 0 0 499088 555993 699 1412 699 1412 X 447106 479633 51283 74948 498389 554581 499088 555993 56192 X false false false X 76940 33580 58434 80339 75342 324635 32993 30084 24955 88032 0 0 0 76940 66573 58434 110423 100297 412667 0 0 412667 4300 2557 1450 1346 1422 11075 0 4300 2557 1450 1346 1422 11075 0 0 81240 69130 59884 111769 101719 423742 0.97390 0.96760 0.02610 0.03240 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4695 3122 1573 1573 false Doyle Chili Bowl 18784 2750 16034 4229 DYER WINE TASTING 8359 8359 27143 2750 24393 4229 4229 20164 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.