ALS Northwest

OUTREACH AND ADVOCACYALS NORTHWEST PROVIDES ONGOING FINANCIAL SUPPORT TO SUPPORT FEDERAL AND STATE 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, 2025, 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. 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 REGION AND ENGAGE COMMUNITY AWARENESS OF THE SERVICES AND RESOURCES AVAILABLE FROM THE ALS NORTHWEST. RESEARCH IS A CRITICAL PART OF THE ORGANIZATIONS 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 THE NORTHWEST.

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 487 MEDICAL EQUIPMENT LOAN REQUESTS DURING THE YEAR ENDED JANUARY 31, 2025. 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, 2025. THE ORGANIZATIONS FINANCIAL ASSISTANCE PROGRAM IS DESIGNED TO PROVIDE HELP WITH THE HIGH COSTS OF CARE FOR FAMILIES LIVING WITH ALS. OVER $143,000 IN GRANTS WERE MADE TO 410 FAMILIES FOR WELL-BEING AND FAMILY SUPPORT, COMMUNICATION SUPPORT, TRANSPORTATION ASSISTANCE, HOME MODIFICATIONS, AND MEDICAL EXPENSES.