$793K in expenses

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.

$528K in expenses

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.

$387K in expenses

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, 2025, care service coordinators made 323 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.

$378K in expenses

Als clinics and certified center supportto support the highest quality healthcare for people with als, the organization partners with and supports community healthcare providers in offering als specialty multidisciplinary clinics. These one-stop shops are evidence-based models that promote coordinated care for people with als at the providence als center, the VA portland health system als center, the ohsu als center, kaiser sunnyside medical center in clackamas, and ST. Charles medical center in bend. The organization has assisted with staffing, supplies, and professional education for clinic providers. During the year ended january 31, 2025, the organization supported over 700 clinic appointments for families with als. In addition, the organization provided funding for special projects that funded counseling services and developed services for families with frontotemporal dementia and a caregiver 101 education event at the providence als center. Additional funds were shared to the als center at ohsu to support nursing staffing.

$313K in expenses

Caregiver support programsthe caregiver support program provides needed emotional support and practical guidance information support for family and other caregivers of people living with als. With support groups and one-on-one caregiver consultations the organization supported 590 families during the year ended january 31, 2025. The family support program offers information and live support events for families living with als who have children or grandchildren. Our family fun week provided education and recreation to multiple families across oregon and southwest washington. We partnered with the providence als center to sponsor caregiver 101 trainings where family caregivers learned practical skills for caring for their loved one with als. The bereavement program provided support for 152 families who had lost a loved one with als in the last year with mail, telephone, and educational outreach communications to assist family members moving through the grieving process.