AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION ST LOUIS REGIONAL CHAPTER
1950 CRAIG ROAD NO 200, SAINT LOUIS, MO 63146 http

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Organizations Filed Purposes: TO DISCOVER TREATMENTS AND A CURE FOR ALS, AND TO SERVE, ADVOCATE FOR, AND EMPOWER PEOPLE AFFECTED BY ALS TO LIVE THEIR LIVES TO THE FULLEST.

PATIENT CARE SERVICES: CASE MANAGEMENT AND SUPPORTIVE PROGRAMS AND SERVICES TO 347 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 SYSTEM AND STRIVE TO INCREASE FUNCTIONAL INDEPENDENCE AND IMPROVE QUALITY OF LIFE FOR PATIENT AND FAMILY MEMBERS. WE ASSESS PATIENT / FAMILY NEEDS, DEVISE INDIVIDUALIZED CARE PLANS THAT INCLUDE HOME VISITS, COUNSELING, END OF LIFE CARE PLANNING, GRIEF COUNSELING; WE HAVE COMMUNITY PARTNERSHIPS WITH ALS MULTIDISCIPLINARY TREATMENT CENTER AT ST. 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. WE WORK COLLABORATIVELY WITH DURABLE MEDICAL EQUIPMENT PROVIDERS, SEATING / MOBILITY PROVIDERS, HOSPICE / HOME HEALTH CARE PROVIDERS; WE PROVIDE FINANCIAL GRANTS, MEDICAL EQUIPMENT, NUTRITIONAL SUPPLEMENTS, TRANSPORTATION ASSISTANCE, AUGMENTATIVE COMMUNICATION AND ASSISTIVE TECHNOLOGY EQUIPMENT LOAN. DUE TO THE DISABLING NATURE OF ALS, ISOLATION IS COMMON SO WE ALSO PROVIDE COMMUNITY LINK VISITING VOLUNTEER PROGRAM.

EDUCATION, AWARENESS AND ADVOCACY: COMMUNITY EDUCATION WORKING TO STIMULATE PUBLIC AWARENESS THROUGH ADVOCACY ACTIVITIES ON STATE AND NATIONAL LEVEL. WE PROVIDE AN EDUCATIONAL INSTITUTE FOR HEALTH CARE PROFESSIONALS, MONTHLY PATIENT INFORMATION UPDATES, PRINTED, VIDEO AND CD LENDING LIBRARY, ALS EDUCATIONAL ACTIVITY BOOKS FOR CHILDREN AND PRINTED AND ON LINE RESOURCE MANUALS FOR ASSISTED TECHNOLOGY, LOSS AND GRIEF, VA HEALTHCARE, NEW PATIENT AND VA BENEFITS. CARE CONNECTIONS PROGRAM TO ORGANIZE EFFORTS OF FAMILY AND FRIENDS TO PROVIDE PATIENT AND FAMILY ADDITIONAL HELP, CARE AND SUPPORT. THROUGH PUBLIC OUTREACH EFFORTS, MEDIA RELATIONS, SOCIAL MEDIA AND THE INTERNET WE CONTINUALLY TELL OUR STORY AND THE STORY OF THOSE BATTLING THIS DISEASE TO IMPRESS UPON THE IMPORTANCE OF OUR SERVICES AND CONTINUED FUNDING NEEDED FOR CARE SERVICES AND ALS RESEARCH.

RESEARCH: OUR CHAPTER WORKS WITH 39 OTHER CHAPTERS ACROSS THE COUNTRY TO SUPPORT GLOBAL RESEARCH AND OUR EFFORTS ARE FOCUSED TOWARDS A SINGLE VISION OF A WORLD WITHOUT ALS. OUR CHAPTER DEDICATES FUNDS EACH YEAR DIRECTED TOWARDS SOME OF THE MOST PROMISING ALS RESEARCH PROJECTS. THESE PROJECTS ARE ALL RELATED TO FINDING THE CAUSE, A TREATMENT AND A CURE AND PATIENTS ARE ABLE TO ENROLL IN CLINICAL TRIALS. THE ALS ASSOCIATION IS THE ONLY ORGANIZATION DEDICATED SOLELY TO THE FIGHT AGAINST ALS. THE ORGANIZATION AS A WHOLE FUNDS AGGRESSIVE, CUTTING EDGE RESEARCH USING THE NEWEST TECHNIQUES WHILE FOSTERING COLLABORATIVE INITIATIVES AMONG GOVERNMENT AGENCIES, THE PRIVATE SECTOR AND SCIENTISTS WHO ARE INVESTED IN TRANSLATIONAL RESEARCH.

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