Organizations Filed Purposes:
FABRY SUPPORT & INFORMATION GROUP (FSIG) IS A 501(c)(3) NONPROFIT ORGANIZATION. OUR MISSION IS TO PROVIDE INFORMATION, ADVOCACY, EDUCATION, AND COMPASSIONATE SUPPORT TO IMPROVE THE QUALITY OF LIFE AND THE QUALITY OF CARE FOR FABRY
PATIENT MEETINGS - SINCE FABRY PATIENTS HAVE A HARD TIME WITH TRAVEL, FSIG TAKES OUR MEETINGS TO THEM IN CITIES NEAR THEM. WE PROVIDE THEM WITH UP TO DATE INFORMATION FROM MEDICAL AND INDUSTRY PROFESSIONALS. THIS ALSO GIVES PATIENTS AN OPPORTUNITY TO TALK TO OTHER FABRY PATIENTS WHO ARE FACING THE SAME DAY TO DAY CHALLENGES AS THEY ARE. IN 2019, WE REACHED APPROXIMATELY 132 PATIENTS/FAMILY MEMBERS.
FEFC REGISTRATION FEE REGISTRATION FEE CHARGED TO COME TO 2019 FSIG EXPERT FABRY CONFERENCE. APPROXIMATELY 104 ATTENDEES OVER 3 DAY 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 |
|---|
| Mark Gelfond | BOARD MEMBER | 0.1 | $0 |
| Fred Battah | BOARD MEMBER | 0.1 | $0 |
| Connie Kreps | BOARD MEMBER | 0.1 | $0 |
| Jason Frett | VICE PRESIDENT | 0.25 | $0 |
| Amy Young | PRESIDENT | 0.5 | $0 |
| Debra Johnson | SECRETARY/TREASURER | 15 | $0 |
| Jack Johnson | CHIEF EXECUTIVE OFFICER | 40 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202002249349301615_public.xml