The ALS Association Oregon and SW Washington Chapter

aka The ALS Association Oregon and SW Washington Chapter   |   Portland, OR   |  alsoregon.org

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

1990

Executive Director

Mr. Lance Christian

Main address

700 NE Multnomah St Suite 210

Portland, OR 97232 USA

Show more contact info

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, 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, The ALS Association Oregon and SW Washington Chapter 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 Association Advocate is a foot soldier in the battle to defeat ALS. An ALS Association 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 Association 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 Association 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

The ALS Association has committed more than $100 million to find effective treatments and a cure for Lou Gehrig’s Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

The ALS Association has funded significant research milestones in the fight against ALS, including:

The groundbreaking discovery of a genetic abnormality that is, to date, the most common cause known of ALS and FTD.
The recent exciting finding involved in familial ALS shows how two proteins work together to buttress the survival of motor neurons.
Discovery of the ALS gene, SOD1, responsible for 20 percent of all inherited ALS cases.
Discovery of ALS6 in 2009, a new gene responsible for about 5% of all inherited ALS cases.
The first clinical trial of ISIS-SOD1, a new drug that specifically targets the SOD1 gene.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Case management notes,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    Our staff, Our board,

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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback,

Financials

The ALS Association Oregon and SW Washington Chapter
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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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  • 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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The ALS Association Oregon and SW Washington Chapter

Board of directors
as of 7/9/2021
SOURCE: Self-reported by organization
Board chair

Amy Frazey

The Standard

Term: 2020 - 2022

Dr. Lou Libby

The Oregon Clinic

Barb Deeming

Community Volunteer

Amy Frazey

The Standard

Barry Brewis

The Brewis Group

Katherine Hart

Moss Adams

Alan Teo, MD, MS

VA Portland Healthcare System and OHSU

Kevin Wright

Travel Oregon

James Lobdell

Portland General Electric

Joe Gross

JGP Wealth Management Group of Wells Fargo Advisors

Kenneth Fink

Paralyzed Veterans of America

James Criswell

PCC Structurals

Rocky Dallum

Tonkon Torp

Doug McClure

Independent Practice

Karen Hughes

Fred Meyer

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 12/22/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

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.