2019-11-07T10:09:34-06:00 2019-05-31 561304727 BLACKMAN & SLOOP CPAS PA 1414 RALEIGH RD SUITE 300 CHAPEL HILL NC 27517 990 2018-06-01 202944028 NATIONAL FABRY DISEASE FOUNDATION NATI 8006519131 4301 CONNECTICUT AVE NW NO 404 WASHINGTON DC 20008 GERALD WALTER BOARD CHAIR 8006519131 2019-11-05 1 ROBIN MCDUFFIE P00098611 9199428700 45.20.211.129 2019-11-05 07:58:18 ES P 0D49E847F3114583DAD4C942B4F602A16906BFDE 0D49E847F3114583DAD4C942B4F602A16906BFDE 2018 2020-01-14 16:20:31Z GERALD WALTER 318 FOX HILL FARM DRIVE HILLSBOROUGH NC 27278 394250 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 508472 394250 0 0 0 0 0 0 508472 394250 112532 113905 0 0 131948 134679 0 0 4580 139665 185366 384145 433950 124327 -39700 258930 219230 0 0 258930 219230 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 168391 113905 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. 232830 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. 401221 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 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 1890 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 1890 1 0 0 0 0 394250 394250 394250 0 0 0 113905 113905 111090 105535 3333 2222 14066 13363 422 281 85 81 3 1 9438 8966 283 189 600 600 22225 21025 1200 27799 22052 4190 1557 5465 5465 18852 17802 1050 91190 91177 13 378 378 LICENSE AND FEES 10125 10125 EDUCATION FEES 5000 5000 SURVEY INCENTIVE 2050 2050 PAYROLL SERVICE FEE 1087 1087 595 265 330 433950 401221 28149 4580 257808 218486 5899 5573 700 326 422 418 258930 219230 0 0 X 258930 219230 258930 219230 258930 219230 -39700 0 X 0 0 0 X 396935 470127 320480 508472 394250 2090264 396935 470127 320480 508472 394250 2090264 1636981 453283 2090264 0.21690 0.17190 X 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 95% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $60 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 SUPPORT PERCENTAGE IN 2018 WAS 21.69% - AN INCREASE FROM 2017 AND THE BOARD REMAINS COMMITTED TO INCREASE THE DONOR BASE. 5899 5573 326 326 0 INDIVIDUAL 162 113905 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.