What We Do

ALS Northwest symbolizes the hopes of people everywhere that Amyotrophic Lateral Sclerosis will one day be a disease of the past, conquered by the dedication of thousands who have worked ceaselessly to understand and eradicate this perplexing killer.

Until that day comes, ALS Northwest relentlessly pursues its mission to help people living with ALS and to leave no stone unturned in the search for a cure for this progressive neurodegenerative disease.

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Care Services

We support hundreds of people with ALS every year with a comprehensive program of care services. ALS Northwest is committed to enhancing the quality of life of people living with ALS through the many free programs we offer to individuals and families affected by ALS. We understand the value of those with the disease being able to communicate, function safely in their home, and travel to ALS Clinics for comprehensive evaluation and treatment. Our programs are designed to meet these essential care needs as well as the emotional needs of those in our community and caregivers. Our services are available to people with ALS in the entire State of Oregon and six counties of SW Washington: Pacific, Wahkiakum, Cowlitz, Clark, Skamania, and Klickitat.

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Advocacy

ALS Northwest focuses on state and federal advocacy for research, health & long-term care, and caregiver support. The ALS Community's involvement in advocacy has led to increased federal funding for ALS research at the NIH and federal funding for ALS research through the Department of Defense.

Research

Every aspect of our work is dedicated to advancing our mission of discovering effective treatments and ultimately eradicating ALS. This underscores the critical importance of funding exceptional ALS research. We prioritize funding the most promising research endeavors and actively cultivate innovative partnerships spanning government, industry, academia, and other nonprofit organizations. Additionally, we invest in emerging talent, nurturing young scientists to drive innovation.

Collaboration is the cornerstone of our research program. We partner with academia, industry, government, and other nonprofit organizations and lead by spurring long-lasting collaborations among researchers across all sectors, leading to globally shared data, protocols, and research samples to accelerate research progress.

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Public Education & Awareness

Through community outreach, media relations, social media, and more, ALS Northwest raises awareness about ALS year-round. Our website is a vital source of information for those battling ALS and for people looking for the latest news and information about the disease. We provide an opportunity for anyone touched by this devastating disease to gather and connect with others through our many community outreach events. In addition, through our relationships with partner organizations, such as local baseball teams and with the news media, we help raise ALS awareness and support.

Our Impact in 2023

People living with ALS and their families come first in everything we do, and everything we do supports the search for effective treatments and cures for ALS. See below for a quick snapshot of some of the accomplishments of the organization over the last year thanks to donor support!

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People with ALS served in Oregon and SW Washington

Care Services Success

Thank you for making 2023 such a robust and impactful year for ALS Northwest! Your advocacy and contributions made a tangible difference, empowering people with ALS and families to remain active, connected, and engaged. Over the past year we refined our virtual suite of care services, offering optimal flexibility for the people we serve – while adding new ones.

Financial Assistance Program

We funded $105,439 in Financial Assistance Grants to families living with ALS. Funds helped people living with ALS and their caregivers with things like respite care, co-pays and home modifications.

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Financial Assistance Grants approved

523

Medical Equipment Loans served to people with ALS

Medical Equipment Loans Program

We provided delivery and custom fitting of medical equipment like electric wheelchairs and Hoyer lifts that help individuals adapt incrementally to their ALS progression, maintain their independence and remain an integral part of their community.

ALS Research Investments

The Chapter funded two major research grants totaling $1,000,000 to support the work of ALS scientists. The awards were made possible by John Schaffers, a longtime friend of the chapter who died from ALS in 2020. Our chapter funds ALS research projects every year, but never before at this unprecedented scale.

Projects funded:

  • Johns Hopkins University: One $500,000 gift supports the work of Jeffrey Rothstein, M.D., PhD, who is testing anti-sense DNA technology in the animal model of ALS to understand protein transportation in motor neurons with the goal of developing a new ALS therapy.
  • Rapa Therapeutics: The second $500,000 gift supports the work of Daniel Fowler, M.D., for an early clinical trial to test the safety and efficacy of a new T-cell treatment that may reduce inflammation in motor neurons, a condition known to accelerate ALS.

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Invested in ALS Research

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Caregiver Bootcamp Participants

Caregiver Training

We piloted ‘Caregiver Bootcamp' (now Caregiving 101), a weeklong online educational series in conjunction with Providence Brain and Spine Institute. The Bootcamp included video trainings and Q&A sessions designed to help caregivers practice self-care while proactively managing their loved one’s care. We are now holding these sessions twice per year.

Where Are Your Donations Going?

710

Support group engagements

162

Active research projects worldwide

730

ALS Clinic appointments through one of our 5 multidisciplinary centers

331

Home visits

5,523

Support communications with people living with ALS, caregivers, and family members

26%

People living with ALS provided with communication and technology assistance