Amyotrophic Lateral Sclerosis

INDIANA CHAPTER OF THE ALS ASSOCIATION (ALSA), A NATIONAL NOT-FOR-PROFIT ORGANIZATION, PROVIDING SERVICES TO PATIENTS WITH AMYOTROPHIC LATERAL SCLEROSIS (ALS) AND THEIR FAMILIES.

ALS CLINICS AND CERTIFIED CENTER SUPPORT: TO SUPPORT THE HIGHEST QUALITY HEALTHCARE FOR PEOPLE WITH ALS, THE ORGANIZATION PARTNERS WITH AND FINANCIALLY SUPPORTS COMMUNITY HEALTHCARE PROVIDERS IN OFFERING ALS MULTIDISCIPLINARY CLINICS. THESE CLINICS ARE EVIDENCE-BASED MODELS THAT PROMOTE COORDINATED CARE FOR PEOPLE WITH ALS. THESE CLINICS ARE HELD AT ONE OF THE ALS ASSOCIATION CERTIFIED CENTERS OF EXCELLENCE AT IU NEUROSCIENCE CENTER, RECOGNIZED ALS CENTER AT RICHARD L. ROUDEBUSH VA MEDICAL CENTER, AS WELL AS THE NEWLY ESTABLISHED ALS CLINIC AT PARKVIEW NEUROSCIENCE CENTER. THE CHAPTER HAS ASSISTED WITH LICENSED SOCIAL WORK STAFFING, TELEHEALTH, NUTRITION CHART, SUPPLIES AND FINICAL COMMITMENT. DURING THE YEAR ENDED JANUARY 31, 2022, THE CHAPTER SUPPORTED OVER 1000 CLINIC APPOINTMENTS FOR FAMILIES WITH ALS AND OVER 200 TELEHEALTH APPOINTMENTS.

OUTREACH & ADVOCACY: AS ONE OF 39 CHAPTERS AFFILIATED WITH THE NATIONAL ALS ASSOCIATION, THE INDIANA CHAPTER PROVIDES ONGOING FINANCIAL SUPPORT FOR THE NATIONAL ALS ASSOCIATION TO SUPPORT FEDERAL PUBLIC POLICY INITIATIVES TO IMPROVE THE LIVES OF FAMILIES LIVING WITH ALS, OUTREACH EFFORTS TO RAISE PUBLIC AWARENESS ABOUT ALS, AS WELL AS GLOBAL RESEARCH WORKING TOWARDS TREATMENTS AND A CURE FOR ALS. PUBLICPOLICY ACCOMPLISHMENTS DURING THE YEAR ENDED JANUARY 31, 2022 INCLUDED VIRTUAL DELEGATION OF PEOPLE WITH ALS TO WASHINGTON D.C. TO ADVOCATE FOR SOCIAL SECURITY AND DISABILITY WAIVER, THE NATIONAL ALS REGISTRY, THE ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, AND PROMOTING FEDERAL SUPPORT FOR ALS RESEARCH.

EDUCATION & SUPPORT PROGRAMS: STRATEGICALLY BASED IN AND NEAR PATIENT'S HOME COMMUNITIES, CARE SERVICE COORDINATORS WORK DIRECTLY WITH PEOPLE WITH ALS AND THEIR FAMILIES TO HELP THEM NAVIGATE MANAGEMENT OF ALS AS WELL AS ACCESS COMMUNITY RESOURCES. IN FISCAL YEAR END JANUARY 31, 2022 CARE SERVICE COORDINATORS SERVED OVER 500 PATIENTS PROVIDING 3,000 HOURS OF SOCIAL WORK. COORDINATORS ARE OFTEN THE CRUCIAL SUPPORT PEOPLE NEED WITH GUIDANCE ON FINANCE, EMPLOYMENT ISSUES, INSURANCE QUESTIONS, SOCIAL SECURITY DISABILITY, MEDICARE, MEDICAID AND LONG TERM CARE PLANNING. COORDINATORS TRANSITIONED TO VIRTUAL MONTHLY SUPPORT GROUPS ACROSS THE REGION WITH 250 ATTENDEES. CARE SERVICES STAFF ALSO PROVIDED PROFESSIONAL EDUCATION FOR COMMUNITY PARTNERS SUCH AS HOSPICE, HOME HEALTH AND HOME CARE AGENCIES TO INCREASE THEIR KNOWLEDGE OF ALS. THE CHAPTER HAS A VERY EXTENSIVE LENDING PROGRAM. WE RECOGNIZE THE IMPORTANCE OF PROPER EQUIPMENT AND ASSISTIVE DEVICES IN MAINTAINING SAFETY, INDEPENDENCE AND IN MAXIMIZING PATIENT'S FUNCTIONALITY AND MINIMIZING FINANCIAL COST ASSOCIATED WITH ALS. THE EQUIPMENT LOAN CLOSET PROGRAM PROVIDES ACCESS TO THE NEEDED MEDICAL EQUIPMENT EITHER AS A BRIDGE WHILE AWAITING INSURANCE APPROVAL OR TO THOSE PATIENTS WITH NO INSURANCE COVERAGE FOR THE EQUIPMENT BEING REQUESTED. THE SUCCESS OF THIS PROGRAM IS DUE TO THE GENEROSITY OF OUR SUPPORTERS AND VENDORS WHO DONATE EQUIPMENT AND TO THE FUNDS RAISED THROUGH OUR WALK TO DEFEAT ALS PROGRAMS WHICH ALLOW US TO PURCHASE NEW ITEMS, REPAIR/REPLACE EXISTING ITEMS, AND ENSURES PROPER MAINTENANCE TO THE VARIOUS DME ITEMS IN THE LOAN CLOSET. DURING THE YEAR ENDED JANUARY 31, 2022, THE CHAPTER LOANED 170 PIECES OF EQUIPMENT TO 120 PATIENTS. PATIENT FINANCIAL GRANT PROGRAMS SUPPORTED PATIENTS FOR BATHROOM ITEMS, AND MEDICAL COPAYS. THE CHAPTER ALSO FUNDED MEDICAL COPAYMENTS FOR POWER WHEELCHAIRS.

AWARENESS EVENTS: EVENTS SPONSORED BY THE CHAPTER INCLUDE THE WALK TO DEFEAT ALS, BOB KRAVITZ GOLF OUTING, CRUISIN' FOR A CURE CAR SHOW, ALS RESEARCH UPDATE, MAY ALS AWARENESS MONTH, AND MISSION CONNECTED SOCIAL MEDIA. NOVEMBER NATIONAL CAREGIVERS' MONTH ACTIVITIES SERVED AS OPPORTUNITIES TO BRING HOPE AND COMMUNITY TO PEOPLE WITH ALS AND THEIR FAMILIES. BY COMING TOGETHER AT AWARENESS EVENTS, PEOPLE WITH ALS AND THEIR FAMILIES, AS WELL AS THOSE WHO HAVE LOST A LOVED ONE TO ALS, FIND STRENGTH AND SUPPORT WITH ONE ANOTHER. MORE THAN 5,000 PEOPLE PARTICIPATE IN THESE EFFORTS TO RAISE THE PROFILE OF THE CHAPTER AND ENGAGE COMMUNITY AWARENESS OF THE SERVICES AND RESOURCES AVAILABLE FROM THE INDIANA CHAPTER.