2025-10-14T08:52:11-05:00 2025-05-31 561304727 BLACKMAN & SLOOP ADVISORS INC 1414 RALEIGH ROAD SUITE 300 CHAPEL HILL NC 27517 990 2024-06-01 202944028 NATIONAL FABRY DISEASE FOUNDATION NATI 9197322799 144 E KING ST 1419 HILLSBOROUGH NC 27278 GERALD WALTER BOARD CHAIR 9197322799 2025-10-13 1 1 ELIZABETH MAUCH P01988953 9199428700 2024 2025-03-06 01:10:19Z GERALD WALTER 144 E KING ST 1419 HILLSBOROUGH NC 27278 592005 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. 6 5 4 63 0 0 571255 581175 0 0 4046 10830 0 0 575301 592005 139353 131994 0 0 264979 325165 0 0 8834 278178 281796 682510 738955 -107209 -146950 413847 269505 0 2608 413847 266897 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 484454 131994 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 THAT CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST POSSIBLE AGE, ALLOWING FOR APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH INDIVIDUALS WHO ARE UNDIAGNOSED WITH FABRY DISEASE BY RAISING AWARENESS OF THE SYMPTOMS ASSOCIATED WITH THIS CONDITION. WE CONTINUED TO PROVIDE 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 (OUR 60 EDUCATIONAL VIDEOS LISTED IN A VIDEO INDEX FLYER), VARIOUS MATERIALS SUCH AS AN A FABRY TESTING FLYER, A CHART OF PRIMARY FINANCIAL ASSISTANT PROGRAMS FOR FABRY, A MENTAL HEALTH PROGRAMS RESOURCE FOR FABRY, FLYER WITH TIPS FOR PEOPLE RECEIVING ENZYME REPLACEMENT AND CHAPERONE THERAPIES, AND A HOT DAYS WITH FABRY FLYER, OUR FACEBOOK PAGE OF MORE THAN 4,300 FOLLOWERS, PERIODIC TWEETS ON OUR X PAGE, OUR PERIODIC FABRY FOCUS E-NEWSLETTER, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE HAVE EXPANDED OUR SOCIAL MEDIA EDUCATION CAMPAIGN WITH INSTAGRAM, LINKEDIN, AND TIKTOK. WE ARE IN CONTACT WITH OVER 3,000 FABRY FOCUS E-NEWLETTER SUBSCRIBERS. REPORTS FROM OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM PROVIDE INVALUABLE INFORMATION TO INFORM PATIENTS AND PHYSICIANS AND PROVIDE INSIGHTS TO STIMULATE ADDITIONAL RESEARCH. WE INCREASE AWARENESS FOR APRIL FABRY DISEASE AWARENESS MONTH BY PROVIDING DAILY SOCIAL MEDIA AND E-NEWSLETTER EDUCATIONAL UPDATES. PUBLISHED LITERATURE INDICATES 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT. 212618 0 0 COMMUNITY SUPPORT: THE NFDF COMMUNITY SUPPORT PROGRAM AND ASSISTANCE PROGRAM IS PROVIDED TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES. THE NFDF HOSTED ITS 13TH ANNUAL FABRY FAMILY CAMP AT VICTORY JUNCTION IN RANDLEMAN, NC. WE PROVIDED DAILY PHONE CALLS, EMAILS, AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED PATIENTS AND FAMILIES WITH A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS AND MANY INNOVATIVE RESOURCES TO HELP PATIENTS/FAMILIES NAVIGATE DISEASE TESTING, FINANCIAL MANAGEMENT ASSISTANCE, MENTAL HEALTH ASSISTANCE, AND OTHER NEEDS. WE 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. 697072 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 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 1 4 1 0 0 0 0 0 0 0 0 0 0 0 0 X 6 5 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 0 0 X GERALD WALTER 9197322799 144 E KING ST 1419 HILLSBOROUGH NC 27278 GERALD WALTER CHAIR 40.00 X X 122499 0 3675 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 ELIZABETH GAFFIN DIRECTOR 1.00 X 0 0 0 STEVEN ROTHMAN DIRECTOR 1.00 X 0 0 0 CASEY A MCKENNA SENIOR PROGRAM MANAGER 40.00 X 101136 0 5000 223635 0 8675 2 0 0 0 0 581175 581175 10830 10830 592005 0 0 10830 10000 10000 121994 121994 127508 121133 3825 2550 161065 153012 4832 3221 14800 14060 444 296 21792 20702 654 436 3811 3811 49733 48117 1216 400 340 340 11448 9257 2191 7078 2711 3296 1071 50049 49958 91 129120 127074 2046 1323 1323 1578 1578 NON OFFICE SUPPLIES 13225 12276 567 382 EDUCATION 3145 271 2874 BANK FEES 2840 2600 240 MEALS AND ENTERTAINMENT 2821 2821 5285 3686 1361 238 738955 697072 33049 8834 205648 62799 204046 204046 10127 8150 3295 1977 395 391 463 292 413847 269505 2608 0 2608 X 413847 266897 413847 266897 413847 269505 -146950 0 X 0 0 0 X 188701 572188 307957 571225 581175 2221246 188701 572188 307957 571225 581175 2221246 1713013 508233 4046 10830 14876 2236122 0.22730 0.24060 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 93% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $240 PER CONTRIBUTION. HOWEVER, THE REMAINING DONORS CONTRIBUTE SUCH LARGE DOLLAR AMOUNTS RELATIVE TO THE INDIVIDUAL DONORS THAT IT IS DIFFICULT TO QUALIFY FOR THE 33% SUPPORT TEST. THE ORGANIZATION'S PERCENTAGE IN 2024 WAS 22.73% - A MINOR DECREASE FROM 2023. THE BOARD REMAINS COMMITTED TO INCREASING THE DONOR BASE. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 10127 8150 1977 1977 0 FABRY SUPPORT AND INFORMATION GROUP 108 NE 2ND STREET CONCORDIA MO 64020 431890134 501(C)3 10000 0 TO SUPPORT FABRY NEWBORN SCREENING INITIATIVES AS A MEMBER OF THE LYSOSOMAL STORAGE DISEASE COALITION. 1 INDIVIDUAL 56 121994 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 UTILITY BILLS IN EMERGENCIES. 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. AN ANALYSIS WAS PERFORMED TO ENSURE THE SALARY FOR OUR FULL-TIME EDUCATION AND COMMUNITY SUPPORT STAFF MEMBER IS APPROPRIATE AND IN LINE WITH PEERS. 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.