Amyotrophic Lateral Sclerosis Association

IMPROVING THE LIVES OF PEOPLE LIVING WITH ALS, RAISING PROGRAM FUNDS & PARTICIPATING IN ADVOCACY.

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 1,340 PATIENTS IN FISCAL YEAR 2022. PROGRAMS INCLUDED: 1) PARTNERSHIP WITH 10 MULTIDISCIPLINARY ALS CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDE IN-KIND STAFF SUPPORT, PROVIDING 1,736 CLINIC VISITS; 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; 3) SUPPORT/RESOURCE GROUPS IN 18 STATEWIDE LOCATIONS, 165 MEETINGS HELD, ATTENDED BY 1,233 PEOPLE OVER THE YEAR; (CONTINUED ON SCHEDULE O)4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 281 PIECES OF DURABLE MEDICAL EQUIPMENT AND ASSISTIVE AUGMENTED COMMUNICATION DEVICES TO PATIENTS IN NEED; 5) ALS SPECIALTY HOME HEALTH COORDINATION; 6) FUNDING FOR 140 MONETARY GRANTS TO PATIENTS THAT PROVIDED 983 HOURS OF RESPITE CARE, AS WELL AS HOME MODIFICATIONS, VAN MODIFICATIONS, TRANSPORTATION, MEDICAL EQUIPMENT NOT COVERED BY INSURANCE, AND OTHER FINANCIAL NEEDS; 7) THE RICK AND SHERRY MURRAY MEDICAL FUTURES SCHOLARSHIP FUND, PROVIDING SCHOLARSHIPS TO 1 STUDENT; 8) 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 DOCS, AND AN AMBASSADOR OF HOPE. IN FISCAL YEAR 2022, BECAUSE OF COVID-19, THIS EVENT WAS HELD VIRTUALLY AND ATTENDED BY 349 CONSTITUENTS.

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.

RESEARCH: THE ALS ASSOCIATION FLORIDA CHAPTER, THROUGH THE ALS ASSOCIATION, HAS FUNDED RESEARCH AT SEVERAL RENOWNED RESEARCH CENTERS IN THE STATE INCLUDING THE MAYO CLINIC IN JACKSONVILLE, THE UNIVERSITY OF SOUTH FLORIDA IN TAMPA, THE UNIVERSITY OF FLORIDA IN GAINESVILLE AND JACKSONVILLE, THE UNIVERSITY OF MIAMI, AND HOLY CROSS. FLORIDA PATIENTS AND RESEARCHERS PARTICIPATE IN A VARIETY OF STUDIES INCLUDING BIOMARKER, DRUG DEVELOPMENT, GENETICS, DISEASE MECHANISM, OBSERVATIONAL/NATURAL HISTORY, AND SYMPTOM MANAGEMENT. THE CHAPTER ALSO WORK TO ENCOURAGE PEOPLE LIVING WITH ALS TO REGISTER WITH THE NATIONAL ALS REGISTRY THROUGH THE CENTERS FOR DISEASE CONTROL AND PREVENTION.

ADVOCACY: THE ALS ASSOCIATION FLORIDA CHAPTER SUPPORTS THE ALS ASSOCIATION'S ADVOCACY AGENDA INCLUDING APPROPRIATIONS, LEGISLATION, AND REGULATORY AFFAIRS.FEDERAL PUBLIC POLICY PRIORITIES:APPROPRIATIONS FOR ALS RESEARCH, INCLUDING THE CDC NATIONAL ALS REGISTRY, DEPARTMENT OF DEFENSE ALS RESEARCH PROGRAM AND NATIONAL INSTITUTE OF HEALTH PROGRAMS.LEGISLATION:WAIVE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY - THE ALS DISABILITY INSURANCE ACCESS ACT (S.379/ H.R.1171) TO ELIMINATE THE FIVE-MONTH WAITING PERIOD FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI) OR MEDICARE DID NOT PASS IN THE 115TH CONGRESS. 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 WOULD ELIMINATE THE FIVE-MONTH WAITING PERIOD FOR PEOPLE WITH ALS. THE BILL WILL BE RE-INTRODUCED IN THE 116TH CONGRESS.REGULATORY AFFAIRS:MEDICARE PROPOSED RULE - THE ALS ASSOCIATION SUBMITTED COMMENTS ON THE CENTERS FOR MEDICARE AND MEDICAID (CMS) PROPOSED RULE 1689-P. THE LETTER FOCUSED ON TWO COMPONENTS OF THE PROPOSED RULE: HOME HEALTH AND HOME INFUSIONS.CHAPTER ADVOCACY ACTIVITIES:MARCH 2021 - PARTICIPATED IN "FLY-IN" ADVOCACY TOP ROOTS (IN WASHINGTON, DC) EVENT VIRTUALLY THIS YEAR BECAUSE OF COVID-19. MET WITH TARGETED FLORIDA REPRESENTATIVES OVER ZOOM VIDEO CALLS.MAY-JUNE 2021 - ANNUAL NATIONAL ALS ADVOCACY DAYS AND PUBLIC POLICY CONFERENCE. ADVOCATES MET WITH MEMBERS OF FLORIDA'S CONGRESSIONAL DELEGATION AND THEIR STAFFS VIA ZOOM CALLS DUE TO TRAVEL RESTRICTIONS RELATED TO COVID-19.OTHER ADVOCACY ACTIVITIES:BOARD OF DIRECTORS COMMITTEE ON ADVOCACY FOCUSED ON ENGAGING BOARD MEMBERS IN FEDERAL ADVOCACY AND DISCUSSED OPTIONS FOR BUILDING A STATE ADVOCACY PROGRAM.