Organizations Filed Purposes:
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).
TO IMPROVE THE QUALITY OF LIFE THROUGH FAMILY SUPPORT, RESEARCH, AND EDUCATION.
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.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Tuesdi Dyer | Executive Dir. | 5 | $77,812 |
| Jennifer Iacobelli | President | 5 | $0 |
| Cj Mortimer | Board Member | 5 | $0 |
| Betsy Rosenbaum | Vice President | 25 | $0 |
| Pilar Magoulas | Board Member | 5 | $0 |
| Richard Boyce | Executive Dir. | 25 | $0 |
| Leslie Rogers | Research Chair | 5 | $0 |
| Glenda Hux | Board Member | 5 | $0 |
| Cara Borian | Board Member | 5 | $0 |
| Libby Airhart | Secretary | 5 | $0 |
| Jeff Kohler | Treasurer | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202013219349307211_public.xml