The Als Association Oregon and Southwest Washington Chapter

“In 2023 the organization filed new articles of incorporation changing the nonprofits name from the als association chapter of oregon and sw washington (dba the als association oregon and sw washington chapter) to als northwest. As part of this change the organization updated their bylaws acknowledging the corporation name change. As part of the update small changes were made to update the bylaws to current ors standards as well as update board committees, board officer titles and board terms.”

“Draft 990 is submitted electronically to board members for approval prior to filing.”

“Annual signed form specifying conflicts of interest is required of all directors. Board members having conflict of interest will recuse themselves from related matters. No conflicts have been noted.”

“The board of directors periodically reviews, approves and substantiates the compensation for the executive director. The process is based on knowledge of comparable positions in similar organizations.”

“The board of directors periodically reviews, approves, and substantiates compensation for other officers and key employees. The process is based on knowledge of comparable positions in similar organizations.”

“Governing documents, policies, and financial statements are available upon reasonable request. The federal form 990 is also available on the guidestar website.”

“Other program services 4: 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, support 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 289 medical equipment loan requests during the year ended january 31, 2024. 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 155 families during the year ended january 31, 2024. The chapter grant program is designed to provide financial assistance for families living with als. Over $143,000 in grants were made to 396 families for well-being and family support, communication support, transportation assistance, home modifications, and medical expenses. A new helping hands volunteer program matched 26 people with als with community volunteers to perform chores and tasks in the home. 127 volunteer visits were madefor a portion of the year the organizations mission was also carried on through services provided by the national als association. Through june a revenue sharing agreement with national whereby approximately 13.6% of revenues net of credit for supporting als research and public policy activities were paid to the national als organization. Other program services 5: outreach and advocacyals northwest actively met with members of congress to urge support for 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 basic science research to understand the disease and to fine new thereapies. Als norhtwest provided over $100,000 to local als clinics at the providence als center and ohsu to support local research activities. The organization also supported funding of the accelerating medicines program at the national institutes of health focused on finding new treatments for als. Awareness events sponsored by the organization include the walk als, ski als, ride for 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 als northwest. 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 als awareness 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.”