2025-02-24T09:51:01-06:00 2024-05-31 561304727 BLACKMAN & SLOOP ADVISORS INC 1414 RALEIGH ROAD SUITE 300 CHAPEL HILL NC 27517 990 2023-06-01 202944028 NATIONAL FABRY DISEASE FOUNDATION NATI 9197322799 144 E KING ST 1419 HILLSBOROUGH NC 27278 GERALD WALTER BOARD CHAIR 9197322799 2025-02-21 1 1 ELIZABETH MAUCH P01988953 9199428700 2023 2025-03-06 01:10:19Z GERALD WALTER 144 E KING ST 1419 HILLSBOROUGH NC 27278 575301 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 3 62 0 0 307957 571255 0 0 0 4046 0 0 307957 575301 108020 139353 0 0 132804 264979 0 0 6967 231874 278178 472698 682510 -164741 -107209 521056 413847 0 0 521056 413847 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 411089 121900 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 (OUR 50 EDUCATIONAL VIDEOS), VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION, EDUCATIONAL CALENDAR, AND A FABRY FACTS EDUCATIONAL PLAYING CARD DECK. FREQUENT EDUCATIONAL POSTS ON OUR FACEBOOK PAGE OF MORE THAN 4,200 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 1,600 ADULTS WITH FABRY DISEASE BY EMAIL. 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 THAN ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT. 227791 17452 COMMUNITY SUPPORT: THE NFDF PROVIDES SUPPORT AND ASSISTANCE TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. OUR COMMUNITY SUPPORT PROGRAM IS PROVIDED TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES. 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 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. 638880 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 3 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 114785 0 3550 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 114785 0 3550 1 0 0 0 0 571255 571255 4046 4046 575301 0 0 4046 10000 10000 129353 129353 123917 117721 3718 2478 119424 113453 3583 2388 257 244 8 5 3042 2890 91 61 18339 17422 550 367 46491 43636 2855 420 420 7436 3326 4110 4681 1095 2158 1428 22407 22183 224 150892 149692 1200 842 842 1533 1533 NON OFFICE SUPPLIES 22225 22225 BANK FEES 10443 10203 240 SURVEY INCENTIVE 4809 4809 EDUCATION 2653 206 2447 3346 625 2721 682510 638880 36663 6967 517870 205648 204046 10127 6832 1802 3295 400 395 984 463 521056 413847 0 0 X 521056 413847 521056 413847 521056 413847 -107209 0 X 0 0 0 X 544803 188701 572188 307957 571225 2184874 544803 188701 572188 307957 571225 2184874 1658150 526724 4046 4046 2188920 0.24060 0.26650 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 97% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $160 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 2023 WAS 24.06% - A MINOR DECREASE FROM 2022. THE BOARD REMAINS COMMITTED TO INCREASING THE DONOR BASE. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 10127 6832 3295 3295 0 FABRY SUPPORT AND INFORMATION GROUP 108 NE 2ND STREET CONCORDIA MO 64020 431890134 501(C)3 10000 0 NEWBORN SCREENING SUPPORT VIA TESTING FOR TOTS, AND ORGANIZATION WITHIN FSIG, AND VIA THE LYSOSOMAL STORAGE DISEASE (LSD) COALITION. 1 INDIVIDUAL 76 129353 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 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 ACKNOWLEDGED BY EACH BOARD MEMBER ANNUALLY BY EMAIL. 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.