Amyotrophic Lateral Sclerosis Association

ALS NETWORK (FORMERLY THE ALS ASSOCIATION GOLDEN WEST CHAPTER) IS DEDICATED TO LEADING THE FIGHT TO TREAT AND CURE ALS THROUGH CUTTING-EDGE RESEARCH AND TARGETED ADVOCACY WHILE ALSO EMPOWERING PEOPLE WITH ALS AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT. ALS NETWORK SUPPORTS PEOPLE LIVING WITH ALS AND THEIR LOVED ONES IN CALIFORNIA, HAWAII, AND ELSEWHERE.

OUR MISSION CRITICAL PROGRAM PRIORITIES INCLUDE CARE SERVICES, RESEARCH, AND ADVOCACY. THESE PROGRAMS ARE PROVIDED TO PEOPLE WITH ALS AND THEIR FAMILIES AT NO CHARGE. OUR ACCOMPLISHMENTS FOR FISCAL YEAR ENDING 1/31/24 ARE AS FOLLOWS:CARE MANAGEMENT -STRATEGICALLY BASED IN AND NEAR PATIENTS' HOME COMMUNITIES, ALS NETWORK CARE MANAGERS (CMS) WORK DIRECTLY WITH PERSONS WITH ALS AND THEIR FAMILIES AND SERVE AS PART OF THE TREATMENT TEAM IN COLLABORATION WITH CLINICIANS FROM ALS SPECIALTY CARE CLINICS. AMONG OTHER THINGS, CMS PROVIDE CRITICAL INFORMATION AND REFERRALS TO PATIENTS AND FAMILIES, HELP PATIENTS OBTAIN MEDICAL AND COMMUNICATION-RELATED EQUIPMENT, CONNECT THEM WITH ESSENTIAL RESOURCES, ADVOCATE FOR THE UNINSURED, EXPLAIN MEDICAL DIRECTIVES, AND OFFER PSYCHOSOCIAL SUPPORT. IN ADDITION, THE CM PROGRAM PROVIDES HELP NAVIGATING COMPLEX BENEFITS SYSTEMS, MORE THAN 30 MONTHLY SUPPORT GROUPS, BEREAVEMENT SUPPORT, EDUCATIONAL WEBINARS, CONCRETE SUPPORT, SAFETY ASSESSMENTS, IN-CLINIC SUPPORT, AND MANY OTHER THINGS. THIS PROGRAM IS AVAILABLE THROUGHOUT CALIFORNIA AND HAWAII. THIS PROGRAM PROVIDED SERVICE TO 1,965 PERSONS WITH ALS. SERVICE WAS AVAILABLE FOR 365 DAYS.

NATIONAL ALS ASSOCIATION -AS A FORMER CHAPTER OF THE ALS ASSOCIATION, ALS NETWORK PROVIDED FINANCIAL SUPPORT TO THE ALS ASSOCIATION NATIONAL OFFICE TO SUPPORT FEDERAL PUBLIC POLICY INITIATIVES TO IMPROVE THE LIVES OF PATIENTS AND FAMILIES LIVING WITH ALS, AS WELL AS GLOBAL CUTTING-EDGE RESEARCH PROJECTS IN SEARCH OF ALS TREATMENTS AND CURES.

COMMUNITY OUTREACH & AWARENESS/PUBLIC POLICY -COMMUNITY OUTREACH EVENTS, INCLUDING OUR ALS WALKS, ARE OPPORTUNITIES TO BRING HOPE AND A SENSE OF COMMUNITY TO PERSONS WITH ALS AND THEIR FAMILIES. BY COMING TOGETHER TO SHARE THEIR STORIES, PEOPLE WITH ALS AND THEIR FAMILIES, AS WELL AS THOSE WHO HAVE LOST LOVED ONES TO ALS, FIND STRENGTH AND SUPPORT WITH ONE ANOTHER. COMMUNITY OUTREACH EVENTS CREATE AN ENVIRONMENT OF EMPOWERMENT WHERE FAMILIES AND FRIENDS OF PERSONS WITH ALS ARE GIVEN AN OPPORTUNITY TO AFFECT PUBLIC POLICY BY SIGNING PETITIONS THAT ARE SENT TO THE LEGISLATORS REPRESENTING THEIR DISTRICTS. THESE EVENTS ALSO BRING AWARENESS TO LOCAL COMMUNITIES OF THOSE FIGHTING ALS AND OF THE SUPPORT AVAILABLE TO THEM THROUGH ALS NETWORK.ALS NETWORK PUBLIC POLICY AND LEADERSHIP DEVELOPMENT PROGRAM IS INTENDED TO INCREASE UNDERSTANDING, EDUCATION AND AWARENESS OF THE DEVASTATING IMPACT OF ALS AND THE ROLE THAT ALS NETWORK PLAYS IN ACHIEVING THE THREE CORE COMPONENTS OF OUR MISSION; CARE AND SUPPORT FOR PEOPLE WITH ALS AND FAMILIES, GLOBAL RESEARCH FOR TREATMENTS AND CURES, AND IMPORTANT PUBLIC POLICY INITIATIVES. THROUGH THESE EFFORTS, WE ENGAGE VOLUNTEERS IN THE COMMUNITIES WE SERVE AND GIVE THEM THE OPPORTUNITY TO PARTICIPATE IN ADVANCING THE ACTIVITY OF THE ORGANIZATION AND THE ACHIEVEMENT OF OUR MISSION PRIORITIES. IN ADDITION, THESE ACTIVITIES HAVE A DIRECT POSITIVE IMPACT ON INCREASING ACCESS TO CARE AND ENSURING SIGNIFICANT FEDERAL FUNDING OF ALS RESEARCH - HISTORICALLY AT AN INCREASED AMOUNT YEAR OVER YEAR. THIS PROGRAM ALSO ENCOMPASSES THE ORGANIZATION'S ROBUST ALS RESEARCH SUMMIT, AN ANNUAL GATHERING OF RESEARCHERS, INVESTIGATORS, CLINICIANS, BIOTECH COMPANIES, GOVERNMENT REPRESENTATIVES AND PATIENT ADVOCATES IN ALS AND RELATED FIELDS. THE PURPOSE OF THE SUMMIT IS TO INCREASE, EXPEDITE AND PROMOTE THE AMOUNT AND LEVEL OF ALS AND RELATED RESEARCH DONE IN CALIFORNIA; AND TO FOSTER NETWORKING, COLLABORATION AND COOPERATION AMONG INVESTIGATORS, THEIR PEERS AND THEIR COLLEAGUES TO IDENTIFY, DEVELOP AND DELIVER NEW AND EFFECTIVE TREATMENTS, IDEAS AND, ULTIMATELY, CURES.

ALS CLINIC SUPPORT - ALS NETWORK IS COMMITTED TO MAKING SURE THAT PEOPLE LIVING WITH ALS HAVE ACCESS TO SPECIALIZED CARE THAT IS BASED ON BEST PRACTICES. PROVEN BY RESEARCH TO HELP PEOPLE WITH ALS LIVE LONGER AND BETTER LIVES, ACCESS TO HIGH QUALITY SPECIALTY CARE IS ONE OF THE CORNERSTONES OF THE ALS NETWORK WRAPAROUND MODEL OF CARE. CHAPTER CARE SERVICES STAFF MEMBERS ARE EMBEDDED IN EACH ALS SPECIALTY CLINIC, WHERE THEY ACT AS KEY MEMBERS OF THE MULTIDISCIPLINARY TEAM AND PROVIDE COMPREHENSIVE SUPPORT TO PERSONS WITH ALS AND THEIR FAMILY MEMBERS/CAREGIVERS. THIS MODEL OF CARE BRINGS TOGETHER A TEAM OF HEALTH CARE PROFESSIONALS SPECIALLY TRAINED TO ADDRESS THE NEEDS OF PEOPLE LIVING WITH ALS, ALLOWING THEM TO RECEIVE CARE FROM EACH DISCIPLINE DURING A SINGLE VISIT. THE CARE TEAM TYPICALLY INCLUDES A NEUROLOGIST, PHYSICAL THERAPIST, OCCUPATIONAL THERAPIST, RESPIRATORY THERAPIST, NURSE, DIETITIAN, SPEECH LANGUAGE PATHOLOGIST, SOCIAL WORKER, MENTAL HEALTH PROFESSIONAL, AND ALS NETWORK LIAISON. THE ALS CLINICS SUPPORTED BY ALS NETWORK CHAPTER PROVIDE COMPASSIONATE CARE IN A SUPPORTIVE, FAMILY-ORIENTED ATMOSPHERE. IN ADDITION TO SUPPORTING ESTABLISHED ALS SPECIALTY CLINICS, THE ALS NETWORK CHAPTER SUPPORTS, STAFFS, AND PROMOTES SATELLITE CLINICS THAT IMPROVE ACCESS TO CRITICALLY NEEDED SERVICES IN AREAS THAT WOULD OTHERWISE LACK ALS SPECIALTY CARE.