2017-06-13T14:13:40-05:00 2017-01-31 273605969 CBIZ MHM LLC 13577 FEATHER SOUND DR STE 400 CLEARWATER FL 33762 990 2016-02-01 943124732 AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION AMYO 8136379000 3242 PARKSIDE CENTER CIRCLE TAMPA FL 33619 KIMBERLEY HANNA PRESIDENT/CEO 8136379000 2017-06-11 1 BETTY ISLER CPA P00541979 7275721400 12.221.96.220 2017-06-11 12:52:01 ED P 1FB0DC6CCBB62E013CE01F3A769F965C875BF8A7 885D0E4AA4EF2F8F4B45274365C6E2B3440D7873 2016 2021-01-29 14:40:06Z THE ALS ASSOCIATION FLORIDA CHAPTER INC KIMBERLEY HANNA 3242 PARKSIDE CENTER CIRCLE TAMPA FL 33619 2544108 0 4119 X ALSAFL.ORG X 1987 FL IMPROVING THE LIVES OF PEOPLE LIVING WITH ALS, RAISING RESEARCH FUNDS & PARTICIPATING IN ADVOCACY. 14 14 30 1886 3173 2173 2857690 2516946 0 0 2034 1467 -48021 -29229 2811703 2489184 552201 464955 0 0 1172752 1287101 0 0 257098 1319196 1068289 3044149 2820345 -232446 -331161 2379043 1997871 583999 533988 1795044 1463883 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. 0 0 1413808 133519 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 1,363 PATIENTS. PROGRAMS INCLUDED: 1) SPONSORSHIP OF 5 ALS MULTIDISCIPLINARY CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDED BOTH FINANCIAL SUPPORT AND IN-KIND STAFFING SUPPORT; 2) A NETWORK OF NINE 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 40,696 PATIENT INTERACTIONS, 36 HOME VISITS, AND 96 PHONE ASSESSMENTS TO PATIENTS AND FAMILIES; 3) SUPPORT/RESOURCE GROUPS IN 19 STATEWIDE LOCATIONS; 4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 226 PIECES OF DURABLE MEDICAL EQUIPMENT AND 29 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 124 MONETARY GRANTS TO PATIENTS THAT PROVIDED 2,797 HOURS OF RESPITE CARE, 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 233 CONSTITUENTS. 636769 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 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 ALS ACCESS, OUR NEWSMAGAZINE, PROVIDED OUR CONSTITUENTS IN THE COMMUNITIES WE SERVE WITH TIMELY INFORMATION ABOUT THE CHAPTER AND THE ACHIEVEMENT OF OUR MISSION PRIORITIES. 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. 331436 331436 RESEARCH: THE ALS ASSOCIATION FLORIDA CHAPTER, THROUGH THE ALS ASSOCIATION, CONTRIBUTES TO RESEARCH AND PARTICIPATES IN THE GLOBAL NETWORK. THE ALS ASSOCIATION FUNDS OVER 180 ACTIVE RESEARCH PROJECTS IN 11 COUNTRIES IN A DIVERSE RESEARCH PORTFOLIO. FLORIDA PATIENTS AND RESEARCHERS PARTICIPATE IN A VARIETY OF DIFFERENT TYPES OF STUDIES: GENETICS - THE NUMBER OF GENES IDENTIFIED TO CAUSE FAMILIAL ALS HAS MULTIPLIED SINCE THE DISCOVERY OF SOD1. EFFORTS SUCH AS WHOLE GENOME SEQUENCING ARE UNDERWAY WITH THE AIM TO IDENTIFY MORE ALS GENES AND TARGET THEM FOR THERAPY. DRUG DEVELOPMENT - THE DRUG DEVELOPMENT PROCESS TAKES YEARS TO COMPLETE ITS MANY STEPS AND IS COSTLY $1-3 BILLION DOLLARS TO MOVE A BASIC RESEARCH IDEA ALL THE WAY THROUGH CLINICAL TRIALS AND FDA APPROVAL. COLLABORATION IS ESSENTIAL. RESEARCHERS FROM ALL OVER THE WORLD IN ACADEMIA, GOVERNMENT, NON-PROFIT AND INDUSTRY WORK TOGETHER TO MOVE ALONG THE PATHWAY OF DRUG DEVELOPMENT AS RAPIDLY AND EFFICIENTLY AS POSSIBLE. DISEASE MECHANISM - UNDERSTANDING HOW ALS DISEASE WORKS ON MANY BIOLOGICAL LEVELS IS NECESSARY TO IDENTIFY POTENTIAL THERAPEUTIC TARGETS. NANOTECHNOLOGY - STUDIES CONDUCTED AT A VERY SMALL SCALE INCLUDING AT AN ATOMIC AND MOLECULAR LEVEL WILL PROVIDE NEW WAYS TO EVALUATE ALS DISEASE. ANIMAL MODELS - ANIMALS, FROM WORMS TO MICE, THAT MIMIC ALS DISEASE GIVE AN IMPORTANT AVENUE TO EXPLORE BOTH DISEASE MECHANISMS AND TO INVESTIGATE OUTCOME MEASURES OF POTENTIAL THERAPEUTICS FROM A CELLULAR TO A BEHAVIORAL LEVEL BEFORE TESTING IN HUMANS. CLINICAL STUDIES - ESTABLISHING AND ADVANCING STANDARDS IN CARE FOR BOTH PEOPLE LIVING WITH ALS AND THEIR CAREGIVERS IS NECESSARY TO IMPROVE AND ENRICH THEIR LIVES NOW. STUDIES IN THIS CATEGORY INCLUDE TOPICS IN CLINICAL MANAGEMENT GRANTS AND CLINICAL TRIALS. COGNITIVE STUDIES - THERE IS A LARGE BODY OF EVIDENCE DEMONSTRATING THAT COGNITIVE IMPAIRMENT CAN BE INVOLVED IN ALS, INCLUDING EVIDENCE OF OVERLAP WITH OTHER DISORDERS LIKE FRONTOTEMPORAL DEMENTIA (FTD). ASSISTIVE TECHNOLOGY - IMPROVING COMMUNICATION SYSTEMS THROUGH DEVELOPING ACCESSIBLE, PORTABLE DEVICES FOR PEOPLE LIVING WITH ALS IS PARAMOUNT TO MAINTAINING A HIGH QUALITY OF LIFE. BIOMARKERS - A MEASURABLE SUBSTANCE, LIKE CHEMICAL CHANGES IN THE BLOOD OR STRUCTURAL CHANGES IN THE BRAIN, ARE DESPERATELY NEEDED TO IMPROVE DIAGNOSIS, FOLLOW DISEASE PROGRESSION AND TRACK RESPONSE TO THERAPY. ENVIRONMENTAL FACTORS - FEATURES IN A PERSON'S ENVIRONMENT ALONE OR IN COMBINATION WITH GENETIC PREDISPOSITION CAN CONTRIBUTE TO THE DEVELOPMENT OF ALS. PRECISION MEDICINE - EFFECTIVE TREATMENTS WILL TARGET AN INDIVIDUAL PATIENT'S DISEASE PROCESS AND TAKE INTO ACCOUNT INDIVIDUAL VARIABILITY IN GENES, ENVIRONMENT AND LIFESTYLE FOR EACH PERSON. NATURAL HISTORY STUDIES - PROJECTS THAT FOLLOWS PEOPLE LIVING WITH ALS OVER TIME TO TRACK DISEASE WILL HELP IDENTIFY DEMOGRAPHIC, GENETIC AND ENVIRONMENTAL FACTORS THAT CORRELATE WITH DISEASE, ALONG WITH INFORMING DRUG DEVELOPMENT AND PATIENT CARE, AMONG OTHER FACTORS. 55863 ADVOCACY: THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTS THE ALS ASSOCIATION'S ADVOCACY AGENDA INCLUDING APPROPRIATIONS, LEGISLATION, AND REGULATORY AFFAIRS. APPROPRIATIONS: PROVIDE $10 MILLION APPROPRIATION TO CONTINUE THE NATIONAL ALS REGISTRY AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION - CONGRESS AND THE ADMINISTRATION MADE ESTABLISHMENT OF THE NATIONAL ALS REGISTRY A TOP PRIORITY THROUGH THE ENACTMENT AND IMPLEMENTATION OF THE ALS REGISTRY ACT IN 2008 (P.L. 110-373). USING A VARIETY OF ENROLLMENT STRATEGIES, INCLUDING ONLINE SELF-ENROLLMENT, THE REGISTRY IDENTIFIES THE NUMBER OF CASES OF ALS IN THE U.S. AND COLLECTS DATA THAT MAY HELP SCIENTISTS LEARN MORE ABOUT WHAT CAUSES THE DISEASE AND HOW IT CAN BE PREVENTED, TREATED, AND, ULTIMATELY, CURED. CONTINUED FUNDING IS NECESSARY TO MOVE THE REGISTRY FORWARD, SUPPORT RELATED ALS RESEARCH, HELP PEOPLE WITH ALS ENROLL IN THE REGISTRY, CONDUCT OUTREACH ACTIVITIES TO IDENTIFY ALS CASES, ESTABLISH AN ALS BIO-REPOSITORY THAT COLLECTS BLOOD AND TISSUE SAMPLES, AND ENABLE THE REGISTRY TO SUPPORT RECRUITMENT FOR CLINICAL TRIALS TO DEVELOP NEW TREATMENTS FOR THE DISEASE. APPROPRIATIONS: PROVIDE $10 MILLION APPROPRIATION TO CONTINUE THE ALS RESEARCH PROGRAM (ALSRP) AT THE DEPARTMENT OF DEFENSE (DOD) - STUDIES SUPPORTED BY THE DOD, DEPARTMENT OF VETERANS AFFAIRS, NATIONAL INSTITUTES OF HEALTH, HARVARD UNIVERSITY AND THE INSTITUTE OF MEDICINE, AMONG OTHERS, REPEATEDLY HAVE FOUND THAT MILITARY VETERANS --REGARDLESS OF BRANCH OR ERA OF SERVICE-- ARE APPROXIMATELY TWICE AS LIKELY TO DIE FROM LOU GEHRIG'S DISEASE AS THOSE WHO HAVE NOT SERVED IN THE MILITARY. TO SUPPORT MILITARY VETERANS IN THE FIGHT AGAINST ALS, CONGRESS AND THE DOD ESTABLISHED THE ALS RESEARCH PROGRAM (ALSRP) IN FY 2007. THE ALSRP FOCUSES ON PEER-REVIEWED TRANSLATIONAL RESEARCH. LEGISLATION: WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY - LEGISLATION HAS BEEN INTRODUCED IN THE HOUSE AND SENATE TO WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI). AFTER A DISABILITY CLAIMANT HAS BEEN APPROVED TO RECEIVE SSDI BENEFITS, THE INDIVIDUAL IS SUBJECT TO A FIVE-MONTH WAITING PERIOD BEFORE THE INDIVIDUAL WILL RECEIVE THE DISABILITY BENEFIT AND ACCESS TO MEDICARE. DURING THIS DEEPLY CHALLENGING TIME, MANY FAMILIES WHO HAVE PAID INTO SOCIAL SECURITY ARE LEFT WITH NO FORM OF INCOME CREATING HARDSHIPS. LEGISLATION: PRESERVE ACCESS TO COMPLEX REHAB TECHNOLOGIES (CRT) - THE ASSOCIATION IS WORKING WITH CONGRESS AND COALITION PARTNERS ON LEGISLATION TO HELP PRESERVE ACCESS TO POWER WHEELCHAIR ACCESSORIES SUCH AS CUSTOM HEAD SUPPORT AND SEATING SYSTEMS, MOUNTING HARDWARE, ADJUSTABLE LEG RESTS, AND SPECIALTY DRIVE CONTROLS AMONG OTHER WHEELCHAIR ACCESSORIES UPON WHICH PEOPLE WITH ALS DEPEND. REGULATORY AFFAIRS: ACCESS TO HOME HEALTH SERVICES - ACCESS TO HOME HEALTH SERVICES IS A FUNDAMENTAL PRIORITY FOR PEOPLE LIVING WITH ALS, THEIR CAREGIVERS AND THE ALS ASSOCIATION. THE ASSOCIATION PLANS TO WORK WITH NEW ADMINISTRATION AND CONGRESSIONAL LEADERS TO ENSURE ACCESS TO HOME HEALTH SERVICES WHICH ENABLE THOSE WITH ALS TO LIVE IN THEIR HOMES AND COMMUNITIES. THIS INCLUDES, BUT IS NOT LIMITED TO, EDUCATING AND ADVOCATING WITH POLICY MAKERS TO ENSURE THAT ANY BARRIERS TO APPROPRIATE ACCESS TO CARE ARE REDUCED OR REMOVED. IT ALSO INCLUDES ADDRESSING PROBLEMS SUCH AS PATIENT AVOIDANCE, DROPPING PATIENTS AND ILLEGALLY LIMITING THE NUMBER OF HOURS SERVICES ARE PROVIDED. ADVOCACY ACTIVITIES:MARCH 2016 - PARTICIPATED IN ""FLY-IN"" ADVOCACY TOP ROOTS EVENT IN WASHINGTON, DC AND VISITED TARGETED FLORIDA REPRESENTATIVES. MAY 2016 - 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. 55863 2437876 1 1 0 1 0 0 0 0 0 1 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 5 0 1 30 1 1 1 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 FL X X KIMBERLEY HANNA 8136379000 3242 PARKSIDE CENTER CIRCLE TAMPA FL 33619 TIM CUMMINGS CHAIRMAN 2.00 X 0 0 0 SANDRA TORRES VICE CHAIRMAN 2.00 X 0 0 0 GLENN STAMBAUGH TREASURER 2.00 X 0 0 0 JAN BERGER SECRETARY 2.00 X 0 0 0 HIRAM GREEN IMMEDIATE PAST CHAIRMAN 2.00 X 0 0 0 WARREN NELSON TRUSTEE 2.00 X 0 0 0 ROBERT MILLER TRUSTEE 2.00 X 0 0 0 KEVIN CONN TRUSTEE 2.00 X 0 0 0 WENDY BITNER TRUSTEE 2.00 X 0 0 0 JOHN CANNISTRA TRUSTEE 2.00 X 0 0 0 DEWAYNE STANDIFER TRUSTEE 2.00 X 0 0 0 RENATE ARMITAGE TRUSTEE 2.00 X 0 0 0 KEN GRIFFIN 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 KIMBERLEY HANNA PRESIDENT/CEO 40.00 X 105011 0 9680 105011 0 9680 1 0 0 0 MAYO CLINIC IN FLORIDA 4500 SAN PABLO RD S JACKSONVILLE FL 322241865 CLINICAL SERVICES 234636 UNIVERSITY OF MIAMI 1120 NW 14TH ST STE 1315 MIAMI FL 33136 CLINICAL SERVICES 212057 UNIVERSITY MEDICAL SERVICES ASSOCIATION 12901 BRUCE B DOWNS BLVD MDC 55 TAMPA FL 33612 CLINICAL SERVICES 184636 3 1489552 450000 577394 54276 2516946 1467 1467 16320 13204 3116 3116 473 2643 5845 1489552 41720 -35875 -35875 ADVERTISING 541800 2700 2700 830 830 3530 2489184 0 3173 -30935 X 390736 390736 74219 74219 115778 92622 11578 11578 978242 773325 38056 166861 99082 79580 3391 16111 93999 74338 4213 15448 700 140 560 41505 8301 33204 461567 452732 966 7869 308537 282988 12131 13418 47392 37533 4691 5168 21387 17105 2141 2141 65759 63040 283 2436 50299 32493 8852 8954 64277 53229 4620 6428 5824 4660 582 582 EXCISE TAX 766 612 77 77 276 223 26 27 2820345 2437876 125371 257098 X 10186 2037 0 8149 127130 80271 1381410 1098236 214315 213969 0 2040 2015 4055 1139247 545422 653510 593825 0 4876 663 599 2379043 1997871 93988 72927 133128 133128 2700 269873 244259 84310 83674 583999 533988 X 1605590 1369280 189454 94603 1795044 1463883 2379043 1997871 -331161 0 X X 0 1 X 1 0 X 1791120 2501243 4410747 2857690 2516946 14077746 5709 7460 8440 5355 5845 32809 1796829 2508703 4419187 2863045 2522791 14110555 21732 28592 23485 48360 28675 150844 0 21732 28592 23485 48360 28675 150844 13959711 875 393 1675 2034 1467 6444 2526 6258 7655 63 2847 19349 3401 6651 9330 2097 4314 25793 3374 8731 2952 830 15887 1800230 2518728 4437248 2868094 2527935 14152235 0.98640 0.98520 0.00180 0.00180 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 0 1 0 0 1 2605 1 0 0 2605 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, 2017, 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). 189454 22958 117809 94603 276068 105560 192174 189454 195908 212777 132617 276068 105422 204090 113604 195908 92841 159402 146821 105422 1.00000 0 0 225000 225000 485609 131087 354522 428638 414335 14303 593825 DUE TO NATIONAL ALS 83674 83674 X 2544108 54924 54924 2489184 0 2489184 2875269 54924 54924 2820345 0 2820345 PART V, LINE 4: THE CHAPTER'S TEMPORARILY RESTRICTED ENDOWMENTS CONSIST OF NET ASSETS SUBJECT TO DONOR IMPOSED STIPULATIONS THAT MAY OR WILL BE MET, EITHER BY ACTIONS OF THE ASSOCIATION AND/OR PASSAGE OF TIME. 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 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, 2013 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, 2017, THIS ACTIVITY GENERATED INCOME TAX EXPENSE OF $848. FOR THE YEAR ENDED JANUARY 31, 2016, THIS ACTIVITY DID NOT GENERATE AN INCOME TAX LIABILITY. PART XI, LINE 2D - OTHER ADJUSTMENTS: EVENT EXPENSES DEDUCTED ON PART VIII, LINE 8B 41,720. RENTAL EXPENSES DEDUCTED ON PART VIII, LINE 6B 13,204. PART XI, LINE 4B - OTHER ADJUSTMENTS: NONCASH CONTRIBUTIONS PART XII, LINE 2D - OTHER ADJUSTMENTS: EVENT EXPENSES DEDUCTED ON PART VIII, LINE 8B 41,720. RENTAL EXPENSES DEDUCTED ON PART VIII, LINE 6B 13,204. WALK TO DEFEAT ALS EVENTS 1332514 1332514 1808 10685 RIDE TO DEFEAT ALS EVENTS 162883 157038 5845 6683 22544 1495397 1489552 5845 8491 33229 41720 -35875 1 USF FOUNDATION INC 4202 E FOWLER AVE ALC 100 TAMPA FL 33620 590879015 501(C)(3) 33100 0 N/A N/A CENTER SUPPORT THE ALS ASSOCIATION 1275 K STREET NW 250 WASHINGTON DC 20005 133271855 501(C)(3) 331436 0 N/A N/A RESEARCH UNIVERSITY OF MIAMI 1252 MEMORIAL DR CORAL GABLES FL 33146 590624458 501(C)(3) 13100 0 N/A N/A CENTER SUPPORT MAYO CLINIC 4500 SAN PABLO RD JACKSONVILLE FL 32224 593337028 501(C)(3) 13100 0 N/A N/A CENTER SUPPORT 4 MEDICAL FUTURES SCHOLARSHIPS 3 4997 0 N/A N/A TRANSPORTATION 20 9261 0 N/A N/A EQUIPMENT LOAN PROGRAM 181 0 0 EQUIPMENT IS NOT VALUED 255 PIECES OF DURABLE MEDICAL EQUIPMENT AND COMMUNICATION DEVICES LOANED. CARE ASSIST GRANTS (SEE PART IV) 121 59961 0 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 1 4876 STOCK QUOTE X MEDICAL EQUIP 53 49400 FAIR MARKET VALUE 0 0 1 1 PART I, LINE 32B: THE CHAPTER USED A THIRD PARTY TO OVERSEE THE RIDE TO DEFEAT ALS EVENTS AND HANDLE LOGISTICS, ON A NON-CONTINGENCY BASIS. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS REVIEWED BY THE FINANCE COMMITTEE OF THE BOARD PRIOR TO FILING WITH THE IRS. THE FINANCE COMMITTEE PRESENTS THE 990 TO THE FULL BOARD. THE 990 IS THEN PROVIDED TO THE FULL BOARD PRIOR TO FILING. 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 EXECUTIVE DIRECTOR'S SALARY IS AS FOLLOWS: (1) THE ED'S PERFORMANCE IS REVIEWED BY THE CHAIRMAN AND A WRITTEN EVALUATION IS PROVIDED TO THE ED 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 EXECUTIVE DIRECTOR; 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 407,499. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 647. TOTAL EXPENSES 408,146. PAYROLL ADMINISTRATION: PROGRAM SERVICE EXPENSES 3,722. MANAGEMENT AND GENERAL EXPENSES 212. FUNDRAISING EXPENSES 768. TOTAL EXPENSES 4,702. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 41,511. MANAGEMENT AND GENERAL EXPENSES 754. FUNDRAISING EXPENSES 6,454. TOTAL EXPENSES 48,719. FORM 990, PART XII, LINE 2C: THE FINANCIAL STATEMENT AUDIT AND SELECTION OF THE INDEPENDENT CPA FIRM IS MANAGED BY THE EXECUTIVE DIRECTOR AND OVERSEEN BY THE FINANCE COMMITTEE OF THE BOARD. THE CPA FIRM PRESENTS THE AUDIT AND 990 TO THE FINANCE COMMITTEE. THE EXECUTIVE DIRECTOR IS EXCUSED FROM PART OF THE MEETING TO ALLOW THE PROCESS TO BE FULLY INDEPENDENT. THE FINANCE COMITTEE 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.