Important Update from the ALS Association Oregon and SW WA Chapter

As a valued member of our ALS community, we have important news to share with you on behalf of the Board of Directors of the ALS Association Oregon and SW Washington Chapter.

As of September 1, 2023, fifteen chapters who are current members of the ALS Association will legally separate from the organization. This includes the Oregon and SW Washington Chapter. These chapters represent nearly half of the total population of people with ALS and more than half of the Certified Treatment Centers of Excellence and multidisciplinary specialty clinics for ALS in the U.S.

Why is this change occurring? Over the past two years, the national office of the ALS Association has worked to merge all 34 legally and financially separate corporate chapter entities across the country into a single corporate organization with decisions and direction from headquarters in Washington DC. The ALS Association’s efforts to consolidate its historically independent members resulted in a dispute that was resolved recently.

After thoughtful deliberation and an assessment of the impact on the community we serve, the Oregon and SW WA Chapter board chose to remain independent and maintain our corporate autonomy to ensure the highest standard and continuity of care for our ALS community while facilitating the search for effective prevention strategies, treatments, and cures. Our Oregon and SW WA Chapter board continues to set our strategic goals and is the fiduciary for our organization. We will continue to collaborate closely with the 14 other independent chapters separating from the ALS Association and will continue to maintain a robust network of information and resource sharing across the United States.

Our programs and services are unduplicated and highly valued by the community we serve. Below are highlights of some of the recent mission-critical accomplishments that you have made possible:

• Annually serving 580+ families living with ALS
• Providing professional care management services and programming to families facing ALS, including underwriting activities that benefit children and teens, hosting educational webinars, and offering more than 15 support groups each month.
• Collaborating with 5 ALS clinic partners, including Certified Treatment Centers of Excellence and Recognized Treatment Centers, to provide seamless, high-quality multidisciplinary care and increase access to clinical trials.
• Distributing financial assistance grants to people and families living with ALS to offset the high costs of coping with ALS.
• Offering hundreds of pieces of medical equipment to people with ALS across Oregon and SW Washington.
• Providing augmentative communication devices, assistive technology, and technical support to people with ALS.
• Catalyzing research and innovation through partnerships for research investment to find new treatments and cures for ALS.
• Advocating for legislation and policies that benefit people with ALS and their loved ones.
• Delivering vibrant events that engage our community and raise crucial funds and awareness.
• Providing support and resources to hundreds of families who have lost a loved one to the disease.

An organization with a grassroots origin story, the Oregon and SW WA Chapter is a trusted resource across the region. We have a decades-long track record of offering support and effective services. We are committed to being a responsive, solutions-oriented thought leader and collaborative partner with people living with ALS, our community partners, other ALS organizations, and the 14 other chapters separating from The ALS Association.

As we chart our next steps of growth and development in pursuit of our ultimate vision of ending ALS, we will provide timely and transparent updates, and we will seek your feedback along the way. We also want to assure you that our essential programs and services, including care management, clinic support, educational webinars, equipment loan program, assistive technology, financial assistance grants, support groups, events of all kinds, and support of groundbreaking research initiatives will not be disrupted. Our organization’s tax ID, mailing address, staff and website will remain the same as well. Learn more about all of our care services.

Embracing change provides our organization with tremendous opportunities, and we also know there will be many questions. We will be sharing more in the weeks ahead including a new organization name. But we are available to answer your questions. Do not hesitate to email or contact us directly.

Sincerely,
Amy Frazey, Board President
Lance Christian, Executive Director