2022-12-22T08:23:35-06:00 2022-05-31 561304727 BLACKMAN & SLOOP CPAS PA 1414 RALEIGH ROAD SUITE 300 CHAPEL HILL NC 27517 990 2021-06-01 202944028 NATIONAL FABRY DISEASE FOUNDATION NATI 8006519131 144 E KING ST 1419 HILLSBOROUGH NC 27278 GERALD WALTER BOARD CHAIR 8006519131 2022-12-13 1 GERALD WALTER 999009999 ELIZABETH MAUCH P01988953 9199428700 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z GERALD WALTER 144 E KING ST 1419 HILLSBOROUGH NC 27278 572188 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 THE MANAGEMENT AND TREATMENT OF FABRY DISEASE. 8 7 2 15 0 0 188701 572188 0 0 0 0 0 0 188701 572188 13206 25165 0 0 128854 124988 0 0 4453 74562 78374 216622 228527 -27921 343661 342157 685818 0 0 342157 685818 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 87267 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; MONTHLY VIRTUAL FAMILY EDUCATION MEETINGS, VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION AND EDUCATIONAL CALENDAR, A FABRY COMMUNITY LANDSCAPE DOCUMENT, FREQUENT EDUCATIONAL POSTS ON OUR FACE BOOK PAGE OF ABOUT 4,000 FOLLOWERS, PERIODIC TWEETS ON OUR TWITTER PAGE, OUR PERIODIC FABRY FOCUS E-NEWSLETTER, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE ARE IN CONTACT WITH OVER 1,300 ADULTS WITH FABRY DISEASE BY EMAIL. REPORTS FROM OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM PROVIDES INVALUABLE INFORMATION TO INFORM PATIENTS AND PHYSICIANS AS WELL AS PROVIDING INSIGHTS TO STIMULATE ADDITIONAL RESEARCH. FOR APRIL FABRY DISEASE AWARENESS MONTH, WE INCREASE AWARENESS TO PROVIDE DAILY SOCIAL MEDIA AND E-NEWSLETTER EDUCATIONAL UPDATES. PUBLISHED LITERATURE INDICATES 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE THAN ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT. 103679 25165 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 CONTINUED TO PROVIDE MY-HEALTH-HANDBOOK-KITS FOR EMERGENCY SITUATIONS. WE FACILITATED TESTING FOR DIAGNOSES AND ACCESS TO TREATMENT. WE CONTINUED TO ADD FABRY SPECIALISTS TO OUR FIND-A-FABRY-SPECIALIST SEARCHABLE DATABASE ON OUR WEBSITE. 190946 1 1 0 0 0 0 0 0 0 0 1 0 0 1 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 1 2 1 0 0 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 144 E KING ST 1419 HILLSBOROUGH NC 27278 ELIZABETH GAFFIN DIRECTOR 1.00 X 0 0 0 TRACEY KRASNOW DIRECTOR 1.00 X 0 0 0 STEVEN ROTHMAN DIRECTOR 1.00 X 0 0 0 DOUGLAS WARNOCK DIRECTOR 1.00 X 0 0 0 GERALD WALTER CHAIR 40.00 X X 109200 0 3276 DEREK HALBERG VICE CHAIR 1.00 X X 0 0 0 TRACY MYATT SECRETARY 1.00 X X 0 0 0 MELANIE WILSON TREASURER 1.00 X X 0 0 0 109200 0 3276 1 0 0 0 0 572188 572188 572188 0 0 0 X 25165 25165 112476 106852 3374 2250 3526 3349 106 71 363 345 11 7 8623 8192 259 172 2750 2750 23598 7800 15798 7194 4409 2785 26963 20588 4662 1713 200 200 10900 10000 900 5 5 1390 1390 NON OFFICE SUPPLIES 2109 2109 SURVEY INCENTIVE 1605 1605 PAYROLL SERVICE FEE 1031 1031 PUBLICATIONS PURCHASED 332 332 297 57 240 228527 190946 33128 4453 341748 629928 5899 5899 0 0 409 404 0 55486 342157 685818 0 0 X 342157 685818 342157 685818 342157 685818 343661 0 X 0 0 0 X 508472 394250 544803 188701 572188 2208414 508472 394250 544803 188701 572188 2208414 1622937 585477 2208414 0.26510 0.28220 X PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST: THE ORGANIZATION'S BOARD IS COMMITTED TO MEETING THE 33 1/3% PUBLIC SUPPORT TEST AND HAS ENACTED SEVERAL PROGRAMS INCLUDING FACEBOOK FUNDRAISING AND AMAZON SMILE TO INCREASE IT'S DONOR BASE. DUE TO THE NATURE OF THIS RARE DISEASE, THE BASE OF SUPPORT IS SOMEWHAT LIMITED TO DONORS WHO ARE KNOWLEDGABLE ABOUT THE DISEASE. OVER 97% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $90 PER CONTRIBUTION. HOWEVER, THE REMAINING DONORS CONTRIBUTE SUCH LARGE DOLLAR AMOUNTS RELATIVE TO THE INDIVIDUAL DONORS WHICH MAKES IT DIFFICULT TO QUALIFY FOR THE 33% SUPPORT TEST. THE ORGANIZATION'S PERCENTAGE IN 2021 WAS 26.51% - A DECREASE FROM 2020, BUT THE BOARD REMAINS COMMITTED TO INCREASING THE DONOR BASE. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 5899 5899 0 0 UNDEPOSITED CHECKS 55467 PETTY CASH 19 55486 0 INDIVIDUAL 22 25165 PURCHASE PRICE PROVIDED GRANTS TO INDIVIDUALS WITH FABRY DISEASE THROUGH OUR URGENT AND UNMET NEEDS ASSISTANCE PROGRAM - INCLUDES SHORT-TERM ASSISTANCE FOR HEALTH INSURANCE PREMIUM PAYMENTS, MINOR MEDICAL EXPENSES, OCCASIONAL CAR PAYMENTS AND REPAIRS, TRANSPORTATION, RENT, AND PHONE BILLS. IN ADDITION, ASSISTANCE WAS PROVIDED TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES TO ATTEND OUR ANNUAL EDUCATIONAL CONFERENCE AND CAMP AND OTHER EDUCATIONAL EVENTS. 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. FORM 990, PART IX, LINE 11G OTHER EXPENSES: PROGRAM SERVICE EXPENSES 7,800. MANAGEMENT AND GENERAL EXPENSES 15,798. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 23,598.