PLATINUM2024

ALS Northwest

Portland, OR   |  alsnorthwest.org

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Mission

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Ruling year info

2024

Executive Director

Mr. Lance Christian

Main address

825 NE Multnomah St Suite 940

Portland, OR 97232 USA

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Formerly known as

The ALS Association Oregon and SW Washington Chapter

EIN

68-0516066

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Neurology, Neuroscience (G96)

Human Services - Multipurpose and Other N.E.C. (P99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
People with diseases and illnesses

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.

Population(s) Served
People with diseases and illnesses

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.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

To provide comprehensive care services, advocate for the ALS community, and fund research for treatments and a cure.

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

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.

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • 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

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

ALS Northwest
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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lock

Connect with nonprofit leaders

Subscribe

Build 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 directors
as of 05/14/2024
SOURCE: Self-reported by organization
Board chair

Jason Drucker

Aya Health

Term: 2024 -

Amy Frazey

The Standard

Katherine Hart

Agricultural Capital

James Lobdell

Retired, Portland General Electric

Kenneth Fink

Paralyzed Veterans of America

Doug McClure

Independent Practice

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

Jason Drucker

Aya Health

Mark Duin

Kone

Mark Doar

Keller Williams Realty

Katie Curtis

Agriculture Capital

Jerry Catlin

Full Value Tax

Lou Libby

Retired, Oregon Clinic

Whitney Parnell

Salesforce

Nick Olney

Providence ALS Center

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 5/13/2024

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
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 12/22/2020

GuideStar 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

Policies and processes
  • 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.