Programs and results
What we aim to solve
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease. ALS takes away the ability to walk, speak, and breathe and shortens the life span to about two to five years. According to case studies published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, out-of-pocket expenses for ALS are estimated at $130,000. The high costs of the disease greatly affect low-income and middle-class families. As ALS progresses, it leads to paralysis and the eventual loss of speech and mobility. For people with ALS, having a conversation with a loved one, opening a door, or turning on a light can be difficult or impossible.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Care Services
Since 2002, ALS Northwest (formerly The ALS Association Oregon and SW Washington Chapter) has been a lifeline for local people with ALS and their families.These families turn to us for information, support groups, special equipment, respite care and guidance for coping with the day to day challenges.
Until there is a cure, ALS Northwest is committed to providing the practical supports that people with ALS, their families and caregivers need to cope with this life-changing disease.
Some of the Top-Notch Services we provide and support: ALS Clinics; Monthly Support Group Meetings; Equipment Medical Loan Closets; Augmentative and Alternative Communication Program; Assistive Technology Loan Closet; Financial Assistance Grant Program; Information and Referrals; Advocacy and Awareness.
In short, we help make an overwhelming disease less overwhelming.
Public Policy
An ALS Northwest Advocate is a foot soldier in the battle to defeat ALS. An ALS Northwest Advocate is someone who is passionate about getting involved with government at all levels to draw awareness and resources to the people affected by this disease. An ALS Northwest Advocate is someone who is willing step outside of their comfort zone to effect real change in the way our government responds to the needs of the ALS community. Even if you aren't a friend relative, supporter or business associate of a legislator, you can open doors through your outreach. As an ALS Northwest Advocate, you can help change the laws and policies that affect thousands of persons with ALS and their families.
Research
ALS Northwest is committed to finding effective treatments and a cure for Lou Gehrigs Disease. 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.
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of clients served
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Number of Home Visits
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
Care Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Number of support groups offered
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
Care Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of loans of durable medical equipment
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
Care Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
To provide comprehensive care services, advocate for the ALS community, and fund research for treatments and a cure.
What are the organization's key strategies for making this happen?
We implement the following programs and services to accomplish our goals:
- Case Management and Home Visits
- ALS Clinic Coordination
- Loaned Medical Equipment
- Augmentative Communication and Assistive Technology
- Support Groups
- Children and Youth Services
- Direct Financial Assistance
- ALS Research Symposium and ALS Research Funding
- State and Federal Advocacy
What are the organization's capabilities for doing this?
We have trained social workers and a speech language pathologist on staff. We partner with extraordinary vendors, established health systems and medical professionals to provide critical care services. We are successful in our fundraising in order to fund research across the globe.
What have they accomplished so far and what's next?
We actively serve over 550 families living with ALS each and every year in Oregon and SW Washington. Since our inception in 2002, we have contributed over $1,000,000 to ALS research.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
ALS Northwest
Board of directorsas of 12/06/2023
Amy Frazey
The Standard
Term: 2020 - 2023
Amy Frazey
The Standard
Katherine Hart
Agricultural Capital
Alan Teo, MD, MS
VA Portland Healthcare System and OHSU
Kevin Wright
Travel Oregon
James Lobdell
Retired, Portland General Electric
Joe Gross
JGP Wealth Management
Kenneth Fink
Paralyzed Veterans of America
Doug McClure
Independent Practice
Jason Drucker
Foureyes
Arturo Gonzalez
Nike
Kim Goslin
Retired, Providence ALS Clinic
Diana Hendrickson
The Corvallis Clinic
Tom Holt
The Holt Company
Ian McHone
Tice Electric Company
Mark Turnbull
ComForCare of West Linn
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 12/22/2020GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.