2018-08-14T13:56:33-05:00 2018-01-31 273605969 CBIZ MHM LLC 13577 FEATHER SOUND DR SUITE 400 CLEARWATER FL 337625539 990 2017-02-01 943124732 AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION AMYO 8136379000 3242 PARKSIDE CENTER CIRCLE TAMPA FL 33619 PHILIP FLYNN III PRESIDENT/CEO 8136379000 2018-08-14 1 ALICIA BROWN P01337755 7275721400 2017 2022-09-23 18:48:47Z THE ALS ASSOCIATION FLORIDA CHAPTER INC PHILIP FLYNN III 3242 PARKSIDE CENTER CIRCLE TAMPA FL 33619 2612074 0 4119 X ALSAFL.ORG X 1987 FL IMPROVING THE LIVES OF PEOPLE LIVING WITH ALS, RAISING RESEARCH FUNDS & PARTICIPATING IN ADVOCACY. 11 11 29 800 1956 956 2516946 2579574 0 0 1467 1468 -29229 -28944 2489184 2552098 464955 539062 0 0 1287101 1096377 0 0 262115 1068289 1103733 2820345 2739172 -331161 -187074 1997871 1833809 533988 557000 1463883 1276809 X LEADING THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL RESEARCH AND NATIONWIDE ADVOCACY WHILE ALSO EMPOWERING PEOPLE WITH LOU GEHRIG'S DISEASE AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT. 1 0 1495028 276471 PATIENT SERVICES: THE ALS ASSOCIATION FLORIDA CHAPTER PROVIDED A WIDE RANGE OF SERVICES AND PROGRAMS TO HELP PEOPLE LIVING WITH LOU GEHRIG'S DISEASE. THE CHAPTER SERVED 1,431 PATIENTS. PROGRAMS INCLUDED: 1) SPONSORSHIP OF 7 ALS MULTIDISCIPLINARY CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDED BOTH FINANCIAL SUPPORT AND IN-KIND STAFFING SUPPORT; 2) A NETWORK OF TEN CARE SERVICES STAFF WHO HELPED PATIENTS, FAMILIES, AND CAREGIVERS NAVIGATE THE PHYSICAL, SOCIAL, EMOTIONAL, AND FINANCIAL EFFECTS OF ALS THROUGH CASE MANAGEMENT, SOCIAL WORK SERVICES, REFERRALS, ASSESSMENTS, EDUCATION AND GOVERNMENT/VETERAN BENEFITS/INSURANCE ADVOCACY BY PROVIDING 55,264 PATIENT AND FAMILY INTERACTIONS; 3) SUPPORT/RESOURCE GROUPS IN 19 STATEWIDE LOCATIONS; (CONTINUED ON SCHEDULE O)4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 350 PIECES OF DURABLE MEDICAL EQUIPMENT AND ASSISTIVE AUGMENTED COMMUNICATION DEVICES TO PATIENTS IN NEED; 5) SURVIVING SPOUSES SOCIAL RENEWAL PROGRAMS; 6) ALS SPECIALTY HOME HEALTH COORDINATION; 7) A KIDS CARE PROGRAM, PROVIDING 14 PACKETS AND RESOURCES FOR CHILDREN WITH FAMILY MEMBERS WHO ARE SUFFERING FROM THE DISEASE; 8) FUNDING FOR 108 MONETARY GRANTS TO PATIENTS THAT PROVIDED 1,556 HOURS OF RESPITE CARE, AS WELL AS HOME MODIFICATIONS, VAN MODIFICATIONS, TRANSPORTATION, MEDICAL EQUIPMENT NOT COVERED BY INSURANCE, AND OTHER FINANCIAL NEEDS; 9) THE RICK AND SHERRY MURRAY MEDICAL FUTURES SCHOLARSHIP FUND, PROVIDING SCHOLARSHIPS TO 3 STUDENTS; AND 10) ONE HOPE AND HELP SYMPOSIUM, A FULL-DAY EVENT THAT FEATURED INFORMATIVE SESSIONS FOR PATIENTS, CAREGIVERS, AND SUPPORTERS OF PEOPLE WITH ALS AND INCLUDED IMPORTANT KEYNOTE SPEAKERS, A VENDOR FAIR, OPPORTUNITIES TO "ASK THE EXPERTS, AND AN AMBASSADOR OF HOPE AWARDS LUNCHEON ATTENDED BY 285 CONSTITUENTS. 580308 16664 AWARENESS: THROUGH PUBLIC OUTREACH, MEDIA RELATIONS, ONLINE PLATFORMS, CHAPTER COLLATERAL, AND SOCIAL MEDIA, THE ALS ASSOCIATION FLORIDA CHAPTER CONTINUED TO RAISE AWARENESS ABOUT ALS, THE PEOPLE WE SERVE, OUR PUBLIC POLICY GOALS, AND THE SEARCH FOR A TREATMENT AND CURE. OUR WEBSITE IS AN INVALUABLE SOURCE OF INFORMATION FOR THOSE LIVING WITH ALS AND PEOPLE LOOKING FOR THE LATEST INFORMATION ABOUT THE DISEASE. CHAPTER COLLATERAL SUCH AS BROCHURES, INFOGRAPHIC HANDOUTS, AND FLYERS PROVIDED OUR CONSTITUENTS IN THE COMMUNITIES WE SERVE WITH TIMELY INFORMATION ABOUT THE CHAPTER AND THE ACHIEVEMENT OF OUR MISSION PRIORITIES. (CONTINUED ON SCHEDULE O)E-COMMUNICATION CAMPAIGNS SUCH AS OUR MONTHLY EMAIL NEWSLETTERS, END OF YEAR GIVING CAMPAIGN, ALS AWARENESS MONTH CAMPAIGN, AND OTHER FUNDRAISING CAMPAIGNS WERE DEVELOPED TO FURTHER OUR PUBLIC POLICY, CARE SERVICES AND GLOBAL RESEARCH GOALS. STATEWIDE AWARENESS EVENTS SUCH AS OUR PARTNERSHIP WITH BOTH MAJOR LEAGUE BASEBALL TEAMS IN FLORIDA, AS WELL AS NUMEROUS MINOR LEAGUE TEAMS, FILM FESTIVALS AND THEATRICAL EVENTS SPOTLIGHTING ALS, AND HEALTH FAIRS PROVIDED OPPORTUNITIES TO BRING THE ALS COMMUNITY TOGETHER THROUGHOUT THE STATE. MEDIA RELATIONS AND ONGOING COMMUNICATION WITH VARIOUS MEDIA OUTLETS AROUND THE STATE PROVIDED THE LATEST NEWS AND MANY PATIENT STORIES, SPOTLIGHTING THE NEED FOR MORE FUNDING AND CARE AND SUPPORT OF THE ALS COMMUNITY IN FLORIDA. SOCIAL MEDIA CHANNELS INCLUDING FACEBOOK, TWITTER, AND INSTAGRAM, PROVIDED THE CHAPTER THE CHANCE TO SPREAD AWARENESS OF THE LATEST RESEARCH UPDATES, CHAPTER AND STATEWIDE EVENTS, AND BUILD AN ONLINE COMMUNITY WITH THOSE LIVING WITH ALS AND THOSE SUPPORTING THE ALS COMMUNITY STATEWIDE. 245927 245927 RESEARCH: IN 2017, THE SECOND DRUG TO TREAT ALS, RADICAVA(R) (EDARAVONE) WAS APPROVED BY THE FOOD & DRUG ADMINISTRATION (FDA). IN A HISTORICAL FIRST THE FDA DID NOT REQUIRE ANY CLINICAL TRIALS TO BE CONDUCTED IN THE U.S. AND RELIED SOLELY ON STUDIES CONDUCTED AND COMPLETED IN JAPAN. THE ALS ASSOCIATION FLORIDA CHAPTER, THROUGH THE ALS ASSOCIATION, CONTRIBUTES TO RESEARCH AND PARTICIPATES IN NINE STRATEGIC GLOBAL PARTNERSHIPS. THE ALS ASSOCIATION FUNDS OVER 150 ACTIVE RESEARCH PROJECTS WORLDWIDE IN A DIVERSE RESEARCH PORTFOLIO. THE ALS ASSOCIATION'S TREAT ALS (TM) (TRANSLATIONAL RESEARCH ADVANCING THERAPY FOR ALS) PORTFOLIO FUNDS RESEARCH FROM EARLY TARGET IDENTIFICATION TO PRECLINICAL RESEARCH AND EARLY PILOT CLINICAL TRIALS. (CONTINUED ON SCHEDULE O)IN FLORIDA, THE ALS ASSOCIATION HAS COMMITTED OVER $2 MILLION TO RESEARCH AT SEVERAL RENOWNED RESEARCH CENTERS IN THE STATE INCLUDING THE MAYO CLINIC IN JACKSONVILLE. FLORIDA PATIENTS AND RESEARCHERS PARTICIPATE IN A VARIETY OF DIFFERENT TYPES OF STUDIES INCLUDING: BIOMARKER, DRUG DEVELOPMENT, GENETIC, DISEASE MECHANISM, ANTISENSE THERAPY, OBSERVATIONAL, AND SYMPTOM MANAGEMENT. THE CHAPTER ALSO INFORMS PEOPLE LIVING WITH ALS ABOUT THE NATIONAL ALS REGISTRY THROUGH THE CENTERS FOR DISEASE CONTROL AND PREVENTION. THE REGISTRY LAUNCHED A BIO-REPOSITORY AND MANY FLORIDA RESIDENTS HAVE DONATED TISSUE SAMPLES. THE CHAPTER ALSO HAS A STRATEGIC PARTNERSHIP WITH "PATIENTS LIKE ME (R)" (PLM) AND MANY PEOPLE LIVING WITH ALS IN FLORIDA HAVE ELECTED TO PARTICIPATE IN PLM RESEARCH PROJECTS SUCH AS DIGITALME (TM). 46579 ADVOCACY: THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTS THE ALS ASSOCIATION'S ADVOCACY AGENDA INCLUDING APPROPRIATIONS, LEGISLATION, AND REGULATORY AFFAIRS.APPROPRIATIONS FOR ALS RESEARCH:-NATIONAL ALS REGISTRY - PROVIDE $10 MILLION APPROPRIATION TO CONTINUE THE NATIONAL ALS REGISTRY AND BIOREPOSITORY AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION. THE REGISTRY COLLECTS DATA AND DIRECTS A BIOREPOSITORY FOR PEOPLE LIVING WITH ALS AND COLLABORATES WITH THE CENTERS FOR MEDICARE AND MEDICAID SERVICES, THE VETERAN'S ADMINISTRATION AND THE NATIONAL INSTITUTES OF HEALTH (NIH). IT IS A CRITICAL DRIVER OF THE SEARCH TO FIND TREATMENTS AND A CURE BECAUSE IT CONNECTS RESEARCHERS CONDUCTING CLINICAL TRIALS WITH PEOPLE LIVING WITH ALS IN ADDITION TO FUNDING ITS OWN RESEARCH. -DEPARTMENT OF DEFENSE - PROVIDE A $10 MILLION APPROPRIATION TO CONTINUE THE ALS RESEARCH PROGRAM (ALSRP) AT THE DEPARTMENT OF DEFENSE (DOD). RESEARCH HAS REPEATEDLY DEMONSTRATED THAT MILITARY VETERANS, REGARDLESS OF BRANCH OR ERA OF SERVICE, ARE APPROXIMATELY TWICE AS LIKELY TO DIE FROM ALS THAN CIVILIANS. THE ALS RESEARCH PROGRAM (ALSRP), FUNDED AS PART OF THE CONGRESSIONAL DIRECTED MEDICAL RESEARCH PROGRAM AT DOD, PROVIDES COMPETITIVE GRANTS THAT ARE AN ESSENTIAL COMPONENT OF EFFORTS TO IDENTIFY TREATMENTS AND A CURE FOR ALS. -NATIONAL INSTITUTES OF HEALTH - CONTINUE ALS RESEARCH AT THE NATIONAL INSTITUTE FOR NEUROLOGICAL DISORDERS AND STROKE AND OTHER INSTITUTES AT THE NATIONAL INSTITUTES OF HEALTH (NIH). NIH SPENDS APPROXIMATELY $55 MILLION FOR ALS RESEARCH WITH NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE (NINDS) MAKING THE LARGEST INVESTMENT AND FOUR OTHER NIH INSTITUTES CONTRIBUTING THE BALANCE. THE ALS ASSOCIATION WORKS WITH RESEARCH!AMERICA TO ADVOCATE FOR APPROPRIATE FUNDING SO THAT NIH CAN MAINTAIN AND INCREASE THIS LEVEL OF COMMITMENT TO ALS RESEARCH.LEGISLATION: WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY - THE ALS ASSOCIATION WAS RESPONSIBLE FOR INTRODUCTION OF THE ALS DISABILITY INSURANCE ACCESS ACT (S.379 / H.R. 1171) IN EARLY 2017 TO ELIMINATE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI) OR MEDICARE. UNDER CURRENT LAW, PEOPLE WITH ALS WHO QUALIFY FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI) MUST WAIT FIVE MONTHS BEFORE RECEIVING SSDI AND ACCESS TO MEDICARE. THE LEGISLATION, IF ENACTED, WOULD ELIMINATE THE FIVE-MONTH WAITING PERIOD FOR PEOPLE WITH ALS.REGULATORY AFFAIRS: ACCESS TO HOME HEALTH SERVICES - ACHIEVABLE POLICY SOLUTIONS ARE NEEDED TO IMPROVE ACCESS TO HOME HEALTH SERVICES FOR PEOPLE LIVING WITH ALS. FEDERAL GOVERNMENT CONCERNS ABOUT WASTE, FRAUD, AND ABUSE OF MEDICARE HOME HEALTH BENEFITS FOR ALL SENIORS AND MISUNDERSTANDINGS ABOUT THE SCOPE OF THE BENEFIT HAVE SIGNIFICANTLY LIMITED ACCESS FOR PEOPLE LIVING WITH ALS. IN 2018, THE ALS ASSOCIATION WILL CONTINUE TO EDUCATE AND ADVOCATE WITH THE ADMINISTRATION AND CONGRESS ON THE HOME HEALTH NEEDS OF PEOPLE WITH ALS AS WELL AS IDENTIFY ACHIEVABLE WAYS TO REMOVE BARRIERS THROUGH REGULATORY AND LEGISLATIVE ACTION.ADVOCACY ACTIVITIES:MARCH 2017 - PARTICIPATED IN "FLY-IN" ADVOCACY TOP ROOTS EVENT IN WASHINGTON, DC AND VISITED TARGETED FLORIDA REPRESENTATIVES.MAY 2017 - ANNUAL NATIONAL ALS ADVOCACY DAYS AND PUBLIC POLICY CONFERENCE IN WASHINGTON, DC. ADVOCATES MET WITH FLORIDA'S TWO (2) SENATORS AND 27 REPRESENTATIVES IN THEIR WASHINGTON OFFICES.AUGUST 2017 - MET WITH SENATORS AND REPRESENTATIVES IN FLORIDA DISTRICT OFFICES DURING CONGRESSIONAL RECESS. 46579 2367842 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 6 0 1 29 1 1 1 0 0 0 0 0 0 0 0 0 X 11 11 0 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 FL X X PHILIP FLYNN III 8136379000 3242 PARKSIDE CENTER CIRCLE TAMPA FL 33619 SANDRA TORRES CHAIRMAN 2.00 X 0 0 0 TIM CUMMINGS IMMEDIATE PAST CHAIRMAN 2.00 X 0 0 0 JOHN CANNISTRA VICE CHAIRMAN 2.00 X 0 0 0 GLENN STAMBAUGH TREASURER 2.00 X 0 0 0 RENATE ARMITAGE SECRETARY (2/1/17-10/25/17) 2.00 X 0 0 0 HIRAM GREEN TRUSTEE (2/1/17-12/31/17) 2.00 X 0 0 0 WARREN NELSON TRUSTEE (2/1/17-12/31/17) 2.00 X 0 0 0 ROBERT MILLER TRUSTEE (2/1/17-12/31/17) 2.00 X 0 0 0 KEVIN CONN TRUSTEE 2.00 X 0 0 0 KEN GRIFFIN TRUSTEE (2/1/17-10/25/17) 2.00 X 0 0 0 WENDY BITNER TRUSTEE 2.00 X 0 0 0 DEWAYNE STANDIFER TRUSTEE 2.00 X 0 0 0 HAMPTON GRAHAM TRUSTEE 2.00 X 0 0 0 JO-ANN CLYNCH TRUSTEE 2.00 X 0 0 0 SHARON MAYBROOK TRUSTEE 2.00 X 0 0 0 ALECIA JONES BAILEY TRUSTEE 2.00 X 0 0 0 KIMBERLY HANNA PRESIDENT/CEO (2/1/17-2/1/18) 40.00 X 85473 0 6956 PHILIP FLYNN III PRESIDENT/CEO (1/2/18-PRESENT) 40.00 X 0 0 0 85473 0 6956 0 0 0 0 UNIVERSITY OF MIAMI 1120 NW 14TH ST STE 1315 MIAMI FL 33136 CLINICAL SERVICES 137106 UNIVERSITY MEDICAL SERVICES ASSOCIATION 12901 BRUCE B DOWNS BLVD MDC 55 TAMPA FL 33612 CLINICAL SERVICES 119739 MAYO CLINIC IN FLORIDA 4500 SAN PABLO RD S JACKSONVILLE FL 322241865 CLINICAL SERVICES 113178 3 1429325 466666 683583 67800 2579574 1468 1468 22440 17676 4764 4764 1956 2808 6052 1429325 42300 -36248 -36248 2540 2540 2540 2552098 0 1956 -29432 X 412711 412711 126351 126351 100473 80379 10047 10047 842031 664427 40540 137064 76463 64546 2501 9416 77410 60888 4165 12357 2905 581 2324 27141 5428 21713 510012 479455 3678 26879 308639 284494 11692 12453 40089 32071 4009 4009 19766 15815 1976 1975 45331 43509 15 1807 124816 76620 4591 43605 19169 15874 1378 1917 5764 4612 576 576 101 81 10 10 2739172 2367842 109215 262115 X 15637 3127 0 12510 80271 77975 1098236 952674 213969 224035 2040 4055 3683 1141257 571178 593825 570079 4876 4827 599 536 1997871 1833809 72927 51646 133128 152295 244259 222992 83674 130067 533988 557000 X 1369280 1178110 94603 98699 1463883 1276809 1997871 1833809 -187074 0 X X 0 1 X 1 0 X 2501243 4410747 2857690 2516946 2579574 14866200 7460 8440 5355 5845 27100 2508703 4419187 2863045 2522791 2579574 14893300 28592 23485 48360 28675 53256 182368 0 28592 23485 48360 28675 53256 182368 14710932 393 1675 2034 1467 4276 9845 6258 7655 63 2847 1808 18631 6651 9330 2097 4314 6084 28476 3374 8731 2952 830 2540 18427 2518728 4437248 2868094 2527935 2588198 14940203 0.98470 0.98640 0.00190 0.00180 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 0 1 0 0 1 3355 1 0 0 3355 0 PART II-B, LINE 1: THE CHAPTER'S ADVOCACY EFFORTS INCLUDE BOTH GRASSROOTS AND DIRECT LOBBYING ACTIVITIES. GRASSROOTS ACTIVITY IS CONDUCTED BY VOLUNTEERS, CLIENTS AND/OR OTHER CONSTITUENTS. THE CHAPTER ASKS OTHERS TO MEET WITH LEGISLATORS OR PUSH INFORMATION FOR THEM TO DO SO. THE MAJORITY OF THE ADVOCACY EFFORTS IS GRASSROOTS ON BOTH A STATE AND FEDERAL LEVEL. DIRECT LOBBYING IS CONDUCTED THROUGH DIRECT MEETINGS WITH LEGISLATORS. FOR THE FISCAL YEAR ENDED JANUARY 31, 2018, THE PRESIDENT/CEO, TWO STAFF MEMBERS, AND VOLUNTEERS SPENT ONE DAY IN TALLAHASSEE (1 - 3 HOURS OF DIRECT MEETING TIME) AND TWO DAYS IN WASHINGTON, D.C. (APPROXIMATELY 3 HOURS OF DIRECT MEETING TIME EACH DAY). 225000 225000 485609 144358 341251 430648 426820 3828 570079 DUE TO NATIONAL ALS 130067 130067 X 2612074 59976 59976 2552098 0 2552098 2799148 59976 59976 2739172 0 2739172 PART X, LINE 2: THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION AND ITS AFFILIATED CHAPTERS, INCLUDING THE ASSOCIATION, HAVE BEEN RECOGNIZED COLLECTIVELY BY THE INTERNAL REVENUE SERVICE AS A TAX-EXEMPT ORGANIZATION DESCRIBED IN SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE OF 1986. INCOME EARNED IN FURTHERANCE OF THE ASSOCIATION'S TAX-EXEMPT PURPOSE IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES. THE ASSOCIATION, THROUGH THE COLLECTIVE EXEMPTION DESCRIBED PREVIOUSLY, IS TREATED AS A PUBLICLY SUPPORTED ORGANIZATION, AND NOT AS A PRIVATE FOUNDATION. THE ASSOCIATION HAS ADOPTED THE PROVISIONS OF ASC TOPIC 740, INCOME TAXES, RELATING TO ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES AND DOES NOT BELIEVE IT HAS ANY MATERIAL INCOME TAX EXPOSURE RELATING TO UNCERTAIN TAX POSITIONS. THE ASSOCIATION'S INCOME TAX FILINGS FOR PERIODS AFTER THE FISCAL YEAR ENDED JANUARY 31, 2014 REMAIN SUBJECT TO EXAMINATION. BEGINNING WITH THE YEAR ENDED JANUARY 31, 2009, THE ASSOCIATION RECEIVED RENT FROM A TENANT, WHICH IS CONSIDERED UNRELATED TAXABLE BUSINESS INCOME. FOR THE YEAR ENDED JANUARY 31, 2018 AND 2017, THIS ACTIVITY GENERATED INCOME TAX EXPENSE OF $4,011 AND $848, RESPECTIVELY. PART XI, LINE 2D - OTHER ADJUSTMENTS: EVENT EXPENSES DEDUCTED ON PART VIII, LINE 8B 42,300. RENTAL EXPENSES DEDUCTED ON PART VIII, LINE 6B 17,676. PART XII, LINE 2D - OTHER ADJUSTMENTS: EVENT EXPENSES DEDUCTED ON PART VIII, LINE 8B 42,300. RENTAL EXPENSES DEDUCTED ON PART VIII, LINE 6B 17,676. WALK TO DEFEAT ALS EVENTS 1249147 1249147 5900 25105 RIDE TO DEFEAT ALS EVENTS 186230 180178 6052 1625 9670 1435377 1429325 6052 7525 34775 42300 -36248 1 USF FOUNDATION INC 4202 E FOWLER AVE ALC 100 TAMPA FL 33620 590879015 501(C)(3) 33100 N/A N/A CENTER SUPPORT THE ALS ASSOCIATION 1275 K STREET NW 250 WASHINGTON DC 20005 133271855 501(C)(3) 140111 N/A N/A RESEARCH UNIVERSITY OF MIAMI 1252 MEMORIAL DR CORAL GABLES FL 33146 590624458 501(C)(3) 13100 N/A N/A CENTER SUPPORT MAYO CLINIC 4500 SAN PABLO RD JACKSONVILLE FL 32224 593337028 501(C)(3) 13100 N/A N/A CENTER SUPPORT THE ALS ASSOCIATION 1275 K STREET NW 250 WASHINGTON DC 20005 133271855 501(C)(3) 208300 N/A N/A ADVOCACY, AWARENESS, CARE SERVICES, ETC. LEE HEALTH SYSTEM PO BOX 2218 FORT MYERS FL 33902 590714812 501(C)(3) 5000 N/A N/A CENTER SUPPORT 5 MEDICAL FUTURES SCHOLARSHIPS 3 5000 N/A N/A TRANSPORTATION 20 5808 N/A N/A EQUIPMENT LOAN PROGRAM 210 EQUIPMENT IS NOT VALUED 350 PIECES OF DURABLE MEDICAL EQUIPMENT AND COMMUNICATION DEVICES LOANED. CARE ASSIST GRANTS (SEE PART IV) 111 60924 N/A N/A HURRICANE IRMA DISASTER FUND 44 54619 N/A N/A PART I, LINE 2: APPLICANTS APPLY FOR GRANTS ONLINE. THE APPLICATION IS REVIEWED FOR A VARIETY OF FACTORS, INCLUDING BUT NOT LIMITED TO VALIDITY OF NEED, FINANCIAL NEED, OTHER POTENTIAL FUNDING SOURCES, ETC. GRANTS ARE SUBSTANTIATED THROUGH RESPITE CALENDARS, EQUIPMENT INVOICES, AND RECEIPTS. PART III - GRANTS AND OTHER ASSISTANCE TO DOMESTIC INDIVIDUALS: FINANCIAL ASSISTANCE PROGRAMS AID FINANCIALLY STRESSED PEOPLE LIVING WITH ALS AND THEIR FAMILIES WITH EQUIPMENT AND SERVICES. ASSISTANCE IS AVAILABLE FOR RESPITE CARE, HOME MODIFICATIONS, VAN MODIFICATIONS OR VAN PURCHASE ASSISTANCE, MEDICAL EQUIPMENT, ASSISTIVE TECHNOLOGY, AND TRANSPORTATION TO AN ALS CERTIFIED CENTER OF EXCELLENCE OR CLINIC AFFILIATED WITH THE ALS ASSOCIATION FLORIDA CHAPTER. WE ALSO OFFER TEMPORARY LOANER EQUIPMENT, INCLUDING SPEECH GENERATING DEVICES, TO FLORIDA RESIDENTS WITH A VERIFIED DIAGNOSIS OF ALS WHO ARE UNINSURED, UNDERINSURED, WHO CANNOT ACCESS THEIR INSURANCE (WHILE IN A NURSING HOME OR HOSPICE) OR WHO ARE WAITING FOR INSURANCE APPROVAL. WE COLLABORATE WITH DURABLE MEDICAL EQUIPMENT (DME) COMPANIES, ACCESSIBLE VAN DEALERS AND MODIFICATION BUSINESSES THAT PROVIDE SERVICES TO PEOPLE WITH ALS AND HAVE SPECIALISTS KNOWLEDGEABLE ABOUT THE PROGRESSIVE EQUIPMENT NEEDS OF PERSONS WITH ALS. X MEDICAL EQUIP 73 67800 FAIR MARKET VALUE 0 0 1 0 FORM 990, PART III, LINE 2 TO ASSIST PEOPLE LIVING WITH ALS WHO WERE AFFECTED BY HURRICANE HARVEY AND HURRICANE IRMA, THE NATIONAL OFFICE FUNDRAISED FOR DOLLARS TO HELP PEOPLE RECOVER AFTER THE STORM. WE ASKED OUR PATIENTS TO SUBMIT AN APPLICATION WITH THEIR NEEDS, INCLUDING THE DOLLAR AMOUNT NEEDED AND RECEIPTS (IF POSSIBLE). THIS INFORMATION WAS SUBMITTED TO THE NATIONAL OFFICE. WE RECEIVED A CHECK AND DISBURSED THE FUNDS IN THE APPROPRIATE AMOUNTS TO THE CONSTITUENTS THAT REQUESTED THE ASSISTANCE. FUNDS NOT USED BY THE CONSTITUENTS WERE RETURNED TO THE NATIONAL OFFICE. FORM 990, PART VI, SECTION A, LINE 4 ARTICLE FOUR, BOARD OF TRUSTEES, OF THE ORGANIZATION'S BYLAWS WAS AMENDED DURING THE YEAR TO: (1) SEPARATELY DEFINE THE TERMS "BOARD AND "TRUSTEE," (2) TO PLACE LIMITATIONS ON THE DELEGATION TO COMMITTEES, (3) TO IMPOSE A MINIMUM OF 3 DIRECTORS, (4) TO BRING IN THE GOVERNANCE COMMITTEE, (5) TO DISTINGUISH BETWEEN TRUSTEES ELECTED TO SERVE A COMPLETE TERM AND THOSE ELECTED TO FILL A VACANCY, (6) TO CLARIFY THAT A VOTE MUST BE A MAJORITY OF ALL TRUSTEES THEN IN OFFICE, NOT JUST A MAJORITY AT THE MEETING, AND (7) TO CLARIFY PROCEDURES TO BE FOLLOWED FOR REMOVAL OF A BOARD MEMBER. FORM 990, PART VI, SECTION B, LINE 11B FORM 990 IS REVIEWED BY THE FINANCE COMMITTEE OF THE BOARD. THE FINANCE COMMITTEE PRESENTS THE 990 TO THE FULL BOARD PRIOR TO FILING WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS ARE ASKED TO SIGN A CONFLICT OF INTEREST POLICY ANNUALLY. BOARD MEMBERS WITH A CONFLICT ON ANY VOTING MATTERS RECUSE THEMSELVES FROM THE VOTE. FORM 990, PART VI, SECTION B, LINE 15 THE PROCESS FOR DETERMINING THE PRESIDENT/CEO'S SALARY IS AS FOLLOWS: (1) THE PRESIDENT/CEO'S PERFORMANCE IS REVIEWED BY THE CHAIRMAN AND A WRITTEN EVALUATION IS PROVIDED TO THE PRESIDENT/CEO AND TO THE EXECUTIVE COMMITTEE; (2) SALARY IS DETERMINED AND DOCUMENTED BY USING COMPARABLE DATA FROM NONPROFITS OF SIMILAR MISSION, BUDGET SIZE, AND GEOGRAPHIC REGION, INCLUDING SISTER ALS CHAPTERS, WITH ALLOWANCES MADE FOR DIFFERENCES IN SIZE AND LOCATION; (3) THE EXECUTIVE COMMITTEE MAKES A RECOMMENDATION TO THE BOARD FOR APPROVAL; AND (4) THE BOARD'S CONSIDERATION AND APPROVAL OF THE COMPENSATION IS DOCUMENTED IN THE BOARDS MINUTES. THE PROCESS FOR DETERMINING KEY EMPLOYEE'S SALARY IS AS FOLLOWS: (1) THE EMPLOYEE'S PERFORMANCE IS REVIEWED BY THE PRESIDENT/CEO; AND (2) SALARY IS DETERMINED AND DOCUMENTED BY USING COMPARABLE DATA FROM NONPROFITS OF SIMILAR MISSION, BUDGET SIZE, AND GEOGRAPHIC REGION. FORM 990, PART VI, SECTION C, LINE 19 THE CHAPTER MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART IX, LINE 11G CLINICAL SERVICES: PROGRAM SERVICE EXPENSES 426,665. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 10,122. TOTAL EXPENSES 436,787. PAYROLL ADMINISTRATION: PROGRAM SERVICE EXPENSES 20,667. MANAGEMENT AND GENERAL EXPENSES 1,337. FUNDRAISING EXPENSES 4,160. TOTAL EXPENSES 26,164. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 32,123. MANAGEMENT AND GENERAL EXPENSES 2,341. FUNDRAISING EXPENSES 12,597. TOTAL EXPENSES 47,061. FORM 990, PART XII, LINE 2C: THE FINANCIAL STATEMENT AUDIT AND SELECTION OF THE INDEPENDENT CPA FIRM IS MANAGED BY THE PRESIDENT/CEO AND OVERSEEN BY THE FINANCE COMMITTEE OF THE BOARD. THE CPA FIRM PRESENTS THE AUDIT AND 990 TO THE FINANCE COMMITTEE. THE PRESIDENT/CEO IS EXCUSED FROM PART OF THE MEETING TO ALLOW THE PROCESS TO BE FULLY INDEPENDENT. THE FINANCE COMMITTEE THEN PRESENTS THE AUDIT AND 990 TO THE FULL BOARD. THE CPA FIRM IS CHOSEN FROM THREE (3) INDEPENDENT PROPOSALS WHEN A CHANGE IN FIRM IS MADE. THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.