Amyotrophic Lateral Sclerosis Association

LEADING THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL RESEARCH AND NATIONWIDE ADVOCACY WHILE ALSO EMPOWERING PEOPLE WITH ALS (LOU GEHRIGS DISEASE) AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT.

OUTREACH AND ADVOCACYAS A CHAPTER OF THE NATIONAL ALS ASSOCIATION, THE OREGON AND SOUTHWEST WASHINGTON 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 CUTTING EDGE GLOBAL RESEARCH WORKING TOWARD AN EFFECTIVE TREATMENT AND ULTIMATELY A CURE FOR ALS. THE ORGANIZATION CONTRIBUTED TO A NATIONAL EFFORT THAT FUNDED SIGNIFICANT PROJECTS TO UNDERSTAND THE CAUSE OF ALS, THE DISEASE MECHANISM, GENETICS, BIOMARKERS FOR ALS, ENVIRONMENTAL FACTORS, AND TRANSLATIONAL RESEARCH TO MOVE THERAPY IDEAS FROM THE LAB BENCH TO THERAPY. RESEARCH SUPPORT WENT TO OVER 150 RESEARCH GRANTS AROUND THE GLOBE. PUBLIC POLICY ACCOMPLISHMENTS DURING THE YEAR ENDED JANUARY 31, 2023 INCLUDE ONLINE ADVOCACY OF PEOPLE WITH ALS TO CONNECT WITH LEGISLATORS IN WASHINGTON DC TO ADVOCATE FOR THE NATIONAL ALS REGISTRY, THE ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, PASSING ACT FOR ALS ACT AND PROMOTING FEDERAL SUPPORT FOR ALS RESEARCH. THE ORGANIZATION PROVIDED OVER $500,000 TO SUPPORT THESE NATIONAL PUBLIC POLICY AND RESEARCH EFFORTS.AWARENESS EVENTS SPONSORED BY THE ORGANIZATION INCLUDE THE WALK TO DEFEAT ALS, SKI TO DEFEAT ALS, RIDE TO DEFEAT ALS, MAY ALS AWARENESS MONTH, CREATION OF PUBLIC SERVICE ANNOUNCEMENTS, MISSION CONNECTED SOCIAL MEDIA, AND CREATION OF VIDEOS THAT ILLUSTRATE WHAT ALS IS AND HOW CHAPTER SERVICES CAN HELP. NOVEMBER NATIONAL FAMILY CAREGIVER MONTH ACTIVITIES SERVE 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. THE LARGE NUMBER OF PEOPLE WHO PARTICIPATE IN THESE EFFORTS RAISE THE PROFILE OF ALS ACROSS THE CHAPTER AND ENGAGE COMMUNITY AWARENESS OF THE SERVICES AND RESOURCES AVAILABLE FROM THE OREGON AND SOUTHWEST WASHINGTON CHAPTER. RESEARCH IS A CRITICAL PART OF THE CHAPTER MISSION. AS PART OF THE EFFORT TO INCREASE THE KNOWLEDGE OF ALS AND THOSE AFFECTED, THE ORGANIZATION PROMOTES DEFEAT ALS EVENTS THAT PROMOTE THE NATIONAL ALS REGISTRY. THIS EFFORT IS VITAL TO UNDERSTAND THE FULL INCIDENCE AND PREVALENCE OF ALS ACROSS OREGON AND SOUTHWEST WASHINGTON SO THAT WE CAN IDENTIFY AND STRATEGICALLY PLAN TO SERVE AS MANY FAMILIES LIVING WITH ALS IN OUR CHAPTER TERRITORY AS POSSIBLE.

INDEPENDENCE PROGRAMSTO SUPPORT AND EMPOWER PEOPLE LIVING WITH ALS TO LIVE INDEPENDENTLY AND AS FULLY AS POSSIBLE, THE ORGANIZATION PROVIDES SERVICES THAT HELP PEOPLE WITH EQUIPMENT AND TOOLS TO ASSIST IN THEIR DAILY LIVES. THE MEDICAL EQUIPMENT LOAN PROGRAM PROVIDES EQUIPMENT SUCH AS MANUAL WHEELCHAIRS, POWER WHEELCHAIRS, BATHROOM EQUIPMENT AND PATIENT LIFTS TO FAMILIES FOR SHORT AND LONG-TERM LOAN. PARTNERING WITH MEDICAL EQUIPMENT COMPANIES ACROSS THE CHAPTER, THE ORGANIZATION FULFILLED 250 MEDICAL EQUIPMENT LOAN REQUESTS DURING THE YEAR ENDED JANUARY 31, 2023. THE ORGANIZATION ALSO HAS A UNIQUE PROGRAM TO ASSIST FAMILIES LIVING WITH ALS IN ACCESSING AUGMENTATIVE AND ALTERNATIVE COMMUNICATION (AAC) EQUIPMENT AS WELL AS ADAPTIVE TECHNOLOGY FOR COMPUTER ACCESS AND ENVIRONMENTAL CONTROLS FOR PEOPLE WITH ALS. THIS PROGRAM PROVIDED SUPPORT, TRAINING, ASSISTIVE AND COMMUNICATION EQUIPMENT LOANS, TECHNICAL ASSISTANCE, AND HOME-BASED SUPPORT TO 186 FAMILIES DURING THE YEAR ENDED JANUARY 31, 2023. THE CHAPTER GRANT PROGRAM IS DESIGNED TO PROVIDE FINANCIAL ASSISTANCE FOR FAMILIES LIVING WITH ALS. OVER $169,000 IN GRANTS WERE MADE TO 414 FAMILIES FOR WELL-BEING AND FAMILY SUPPORT, COMMUNICATION SUPPORT, TRANSPORTATION ASSISTANCE, HOME MODIFICATIONS, AND MEDICAL EXPENSES.THE ORGANIZATIONS MISSION IS ALSO CARRIED ON THROUGH SERVICES PROVIDED BY THE NATIONAL ALS ASSOCIATION (NATIONAL). THE ALS CHAPTERS HAVE A REVENUE SHARING AGREEMENT WITH NATIONAL WHEREBY APPROXIMATELY 13.6% OF REVENUES NET OF CREDIT FOR SUPPORTING ALS RESEARCH AND PUBLIC POLICY ACTIVITIES ARE PAID TO THE NATIONAL ORGANIZATION.

EDUCATION AND SUPPORT PROGRAMSSTRATEGICALLY BASED IN AND NEAR PATIENTS HOME COMMUNITIES, CARE SERVICES COORDINATORS WORK DIRECTLY WITH PEOPLE WITH ALS AND THEIR FAMILIES TO HELP THEM NAVIGATE MANAGEMENT OF ALS AS WELL AS ACCESS COMMUNITY RESOURCES. DURING THE YEAR ENDED JANUARY 31, 2023, CARE SERVICE COORDINATORS MADE 356 HOME VISITS. IN THESE VISITS, 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 QUESTIONS. COORDINATORS FACILITATED 188 ALS SUPPORT GROUPS IN PERSON AND ONLINE. 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.