THE AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION ST LOUIS REGIONAL CHAPTER

PATIENT CARE SERVICES: CASE MANAGEMENT AND SUPPORTIVE PROGRAMS AND SERVICES TO 345 INDIVIDUALS DIAGNOSED WITH ALS AND THEIR FAMILY MEMBERS IN EASTERN MISSOURI AND CENTRAL AND SOUTHERN ILLINOIS. SERVICES AND PROGRAMS ARE FREE OF CHARGE. CARE SERVICE COORDINATORS HELP FAMILIES NAVIGATE THROUGH HEALTHCARE SYSTEMS AND STRIVE TO INCREASE FUNCTIONAL INDEPENDENCE WHILE IMPROVING QUALITY OF LIFE. THE CHAPTER ASSESSES PATIENT/FAMILY NEEDS, DEVISES INDIVIDUALIZED CARE PLANS THAT INCLUDE HOME VISITS, COUNSELING, END OF LIFE CARE PLANNING, AND GRIEF COUNSELING; PARTICIPATION WITH COMMUNITY PARTNERSHIPS WITH ALS MULTIDISCIPLINARY TREATMENT CENTERS AT SAINT LOUIS UNIVERSITY AND AFFILIATED CLINICS AT WASHINGTON UNIVERSITY AND JOHN COCHRAN VA MEDICAL CENTER IN ST. LOUIS, ST. FRANCIS IN CAPE GIRARDEAU AND SIU MEDICAL CENTER IN SPRINGFIELD ILLINOIS; COLLABORATION WITH DURABLE MEDICAL EQUIPMENT PROVIDERS, SEATING/MOBILITY PROVIDERS, HOSPICE/HOME HEALTH CARE PROVIDERS; PROVISION OF FINANCIAL GRANTS, MEDICAL EQUIPMENT, NUTRITIONAL SUPPLEMENTS, TRANSPORTATION ASSISTANCE, AUGMENTATIVE COMMUNICATION AND ASSISTIVE TECHNOLOGY EQUIPMENT LOAN; AND OFFERS A VOLUNTEER PROGRAM, PROVIDING VISITING HELPERS TO ASSIST WITH HOUSEHOLD CHORES AND COMPANIONSHIP.

EDUCATION, AWARENESS AND ADVOCACY: STIMULATE PUBLIC AWARENESS THROUGH ADVOCACY ACTIVITIES ON STATE AND NATIONAL LEVELS. THE CHAPTER PROVIDES AN EDUCATIONAL INSTITUTE FOR HEALTH CARE PROFESSIONALS, REGULAR PATIENT INFORMATION UPDATES, A PRINTED, VIDEO AND CD LENDING LIBRARY, ALS EDUCATIONAL ACTIVITY BOOKS FOR CHILDREN, AND PRINTED AND ONLINE RESOURCE MANUALS FOR ASSISTANCE WITH TECHNOLOGY, LOSS AND GRIEF, VA HEALTHCARE AND BENEFITS. VOLUNTEER PROGRAM EDUCATES FAMILY AND FRIENDS ABOUT PATIENT NEED SO THEY CAN PROVIDE PATIENT AND FAMILY ADDITIONAL HELP, CARE AND SUPPORT. THROUGH PUBLIC OUTREACH EFFORTS, MEDIA RELATIONS AND SOCIAL MEDIA, THE CHAPTER CONTINUALLY TELLS THE STORY OF THOSE BATTLING THE DISEASE AND THE IMPACT OF OUR WORK TO INCREASE UNDERSTANDING AND SEEK CONTINUED FUNDING NEEDED FOR CARE SERVICES AND ALS RESEARCH.