2019-09-19T08:16:06-05:00 2018-05-31 561304727 BLACKMAN & SLOOP CPAS PA 1414 RALEIGH RD SUITE 300 CHAPEL HILL NC 27517 990 2017-06-01 202944028 NATIONAL FABRY DISEASE FOUNDATION NATI 8006519131 4301 CONNECTICUT AVE NW NO 404 WASHINGTON DC 20008 GERALD WALTER BOARD CHAIR 8006519131 2019-09-16 1 ROBIN MCDUFFIE P00098611 9199428700 45.20.211.129 2019-09-16 08:46:56 ED P 0D49E847F3114583DAD4C942B4F602A16906BFDE 0D49E847F3114583DAD4C942B4F602A16906BFDE 2017 2019-02-21 02:37:17Z GERALD WALTER 318 FOX HILL FARM DRIVE HILLSBOROUGH NC 27278 508472 0 X HTTP://WWW.FABRYDISEASE.ORG X 2005 VA TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND TREATED IN TIME TO AVOID A DIMINISHED QUALITY OF LIFE AND LIFE THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS; AND TO PROMOTE RESEARCH TO IMPROVE TREATMENT FOR FABRY DISEASE. 8 7 2 57 0 0 320480 508472 0 0 0 0 0 0 320480 508472 111670 112532 0 0 130300 131948 0 0 7007 178251 139665 420221 384145 -99741 124327 133009 258930 0 0 133009 258930 X TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND PROVIDED AN OPPORTUNITY FOR TREATMENT IN TIME TO AVOID A DIMINISHED QUALITY-OF-LIFE AND LIFE-THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES, TO PHYSICIANS, AND TO THE PUBLIC; TO PROVIDE SUPPORT AND ASSISTANCE TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES; AND TO CONDUCT AND PROMOTE RESEARCH TO IMPROVE MANAGEMENT AND TREATMENT FOR FABRY DISEASE. 0 0 126815 210 EDUCATION AND AWARENESS: EARLY INTERVENTION IMPROVES MANY ADVERSE QUALITY-OF-LIFE SYMPTOMS AND EXTENDS PATIENTS' LIFE EXPECTANCY. OUR FAMILY AND PHYSICIAN EDUCATION PROGRAMS HELP TO ENSURE CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST AGE POSSIBLE TO RECEIVE APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH UNDIAGNOSED INDIVIDUALS BY RAISING AWARENESS OF THE SYMPTOMS OF FABRY DISEASE. WE PROVIDED EDUCATION AND AWARENESS ABOUT FABRY DISEASE IN VARIOUS FORMS SUCH AS OUR ROBUST EDUCATIONAL WEBSITE AT WWW.FABRYDISEASE.ORG; OUR ANNUAL FAMILY EDUCATION CONFERENCE; VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION, HAND-OUT AND CALENDAR, A FABRY COMMUNITY LANDSCAPE DOCUMENT, FREQUENT (OFTEN DAILY) EDUCATIONAL POSTS ON OUR FACE BOOK PAGE OF OVER 2,000 FOLLOWERS, PERIODIC TWEETS ON OUR TWITTER PAGE, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE ARE IN CONTACT WITH OVER 1,200 ADULTS WITH FABRY DISEASE BY EMAIL. OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM YIELDED 200 TO 400 HUNDRED PARTICIPANTS PER SURVEY. WE FACILITATED OBTAINING ABOUT 40 OF 50 STATE GOVERNOR'S PROCLAMATIONS FOR APRIL FABRY DISEASE AWARENESS MONTH; EVIDENCE INDICATES THAT 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT. 231648 112322 COMMUNITY SUPPORT: PROVIDE SUPPORT AND ASSISTANCE TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. OUR COMMUNITY SUPPORT PROGRAM IS DIRECTED TO PEOPLE LIVING WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED DAILY PHONE CALLS, EMAIL AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS AND FAMILIES WITH FABRY DISEASE. WE PROVIDED PATIENTS AND FAMILIES A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS, PURCHASED MANY JOURNAL ARTICLES TO SHARE WITH THE COMMUNITY, PROVIDED TRANSPORTATION AND OTHER ASSISTANCE TO ATTEND FABRY EDUCATIONAL MEETINGS, PROVIDED FINANCIAL ASSISTANCE FOR ONE-TIME OR SHORT TERM NEEDS NOT COVERED BY OTHER PROGRAMS, AND PROVIDED MY-HEALTH-HANDBOOK-KITS FOR EMERGENCY SITUATIONS. WE FACILITATED TESTING FOR DIAGNOSES AND ACCESS TO TREATMENT. WE PROVIDED A FIND-A-FABRY-SPECIALIST SEARCHABLE DATABASE ON OUR WEBSITE. WE CONDUCTED AN ANNUAL CAMP FOR CHILDREN AND FAMILIES TO CONNECT AND SHARE EXPERIENCES. WE PROVIDED ASSISTANCE TO BRING 32 FAMILIES TO CAMP FROM ACROSS THE COUNTRY. BECAUSE THE DISEASE IS RARE, MANY PATIENTS AND THEIR FAMILIES DO NOT KNOW ANYONE ELSE LIVING WITH FABRY DISEASE. THE MUTUAL SUPPORT CONNECTIONS MADE THROUGH OUR CAMP PROGRAM ARE INVALUABLE WITHIN THE COMMUNITY. 358463 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 2 1 0 0 0 0 0 0 0 0 0 0 X 8 7 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 0 0 X GERALD WALTER 8006519131 PO BOX 1325 CARRBORO NC 27510 DOUGLAS WARNOCK DIRECTOR 1.00 X 0 0 0 STEVEN ROTHMAN DIRECTOR 1.00 X 0 0 0 ELIZABETH GAFFIN DIRECTOR 1.00 X 0 0 0 TRACEY KRASNOW DIRECTOR 1.00 X 0 0 0 GERALD WALTER CHAIR 40.00 X 109200 0 0 DEREK HALBERG VICE CHAIR 1.00 X 0 0 0 TRACY MYATT SECRETARY 1.00 X 0 0 0 MELANIE WILSON TREASURER 1.00 X 0 0 0 109200 0 0 1 0 0 0 0 508472 508472 508472 0 0 0 112532 112532 109200 103740 3276 2184 13368 12700 401 267 9380 8911 281 188 22705 22465 240 16358 2842 9568 3948 15718 14172 1546 82760 81101 1659 471 471 PAYROLL SERVICE FEE 1167 1167 BANK FEES 420 420 OTHER EXPENSES 66 66 384145 358463 18675 7007 133009 257808 5899 5199 0 700 422 133009 258930 0 0 X 133009 258930 133009 258930 133009 258930 124327 1594 0 X 0 0 0 X 414862 396935 470127 320480 508472 2110876 414862 396935 470127 320480 508472 2110876 1748116 362760 2110876 0.17190 0.44290 X 5899 5199 700 700 0 INDIVIDUAL 165 112532 PURCHASE PRICE PROVIDED GRANTS TO INDIVIDUALS FOR TRAVEL, LODGING AND MEAL ASSISTANCE TO PARTICIPATE IN EDUCATIONAL MEETINGS, MEDICAL VISITS AND OUR ANNUAL CONFERENCE AND CAMP AS WELL AS PROVIDED GRANTS TO INDIVIDUALS FOR URGENT AND UNMET MEDICAL AND LIVING EXPENSE NEEDS. FORM 990, PART VI, SECTION A, LINE 8B THE ORGANIZATION DOES NOT HAVE ANY COMMITTEES. FORM 990, PART VI, SECTION B, LINE 11B PRIOR TO FILING, FORM 990 WILL BE REVIEWED BY THE CHAIRMAN AND TREASURER AND THEN DISTRIBUTED TO THE FULL BOARD FOR REVIEW. FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS REVIEWED AND SIGNED BY EACH BOARD MEMBER ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15A THE SALARY LEVEL AND BENEFITS PACKAGE OF THE CHAIRMAN WAS INDEPENDENTLY REVIEWED AND DOCUMENTED BY THE BOARD OF DIRECTORS, TO ENSURE IT DOES NOT EXCEED COMPARABLE LEVELS OF COMPENSATION FOR NON-PROFIT DIRECTORS WITH SIMILAR EXPERIENCE AT COMPARABLE ORGANIZATIONS. FORM 990, PART VI, SECTION C, LINE 19 THE THREE MOST RECENT FORM 990S, THE BYLAWS, ARTICLES OF INCORPORATION, EXEMPT STATUS INFORMATION, AND CONFLICT OF INTEREST POLICY ARE PROVIDED TO THE PUBLIC UPON REQUEST. REASONABLE CAUSE STATEMENT FOR LATE FILING 2017 FORM 990:SECTION 6651(A)(1) INDICATES THE LATE FILING PENALTY WILL NOT BE IMPOSED IF THE ORGANIZATION CAN SHOW REASONABLE CAUSE FOR FAILURE TO FILE A COMPLETE OR TIMELY RETURN. IN LATE 2018 THE CHAIR WHO ACTS AS THE EXECUTIVE DIRECTOR OF THE ORGANIZATION HAD A SERIOUS HEALTH SITUATION REQUIRING LENGTHY HOSPITALIZATION AND MANY WEEKS OF DAILY REHABILITATION LEAVING THE CHAIR TOO ILL TO COMPILE THE DATA NECESSARY TO MEET THE APRIL 15, 2019 EXTENDED FILING DEADLINE. WE ALSO ASK THAT YOU CONSIDER THE CHAIR IS THE ONLY FULL-TIME EMPLOYEE OF THE ORGANIZATION. THE OTHER EMPLOYEE, WHO WORKS LESS THAN 10 HOURS PER WEEK, DID NOT HAVE ACCESS TO ALL OF THE DATA NECESSARY TO COMPLETE THE TAX RETURN.GOING FORWARD THE ORGANIZATION HAS THE ORGANIZATION HAS ENGAGED AN OUTSIDE ACCOUNTING FIRM TO TRACK DUE DATES AND ASSIST THE ORGANIZATION WITH MEETING IT'S FILING OBLIGATIONS.