AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION

CARE 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 1,779 PATIENTS IN FISCAL YEAR 2023. PROGRAMS INCLUDED: 1) PARTNERSHIP WITH 12 MULTIDISCIPLINARY ALS CLINICS IN THE STATE OF FLORIDA, WHICH INCLUDE IN-KIND STAFF SUPPORT, PROVIDING 2030 CLINIC VISITS; 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; 3) 10 MONTHLY/BIMONTHLY VIRTUAL SUPPORT/RESOURCE GROUPS OFFERED TO ALL REGISTERED PATIENTS THROUGHOUT FLORIDA, 132 MEETINGS HELD IN FY2023; (CONTINUED ON SCHEDULE O)4) LOANED MEDICAL EQUIPMENT AND ASSISTIVE TECHNOLOGY PROGRAMS THAT PROVIDED 435 PIECES OF DURABLE MEDICAL EQUIPMENT AND ASSISTIVE AUGMENTED COMMUNICATION DEVICES TO PATIENTS IN NEED; 5) ALS SPECIALTY HOME HEALTH COORDINATION; 6) FUNDING FOR 173 MONETARY GRANTS TO PATIENTS THAT PROVIDED 2202 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. THE FY2023 EVENT WAS HELD IN ORLANDO AND 229 ATTENDED.

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.