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PORTLAND OR | IRS ruling year: 1990 | EIN: 68-0516066
To discover treatments and cures for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
Great
This charity's score is 98%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores: 80% Accountability & Finance, 10% Leadership & Adaptability, 10% Culture & Community. Learn more about our criteria and methodology.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
The IRS is significantly delayed in processing nonprofits' annual tax filings (Forms 990). As a result, the Accountability & Finance score for ALS Association Oregon and SW Washington is outdated and the overall rating may not be representative of its current operations. Please check with the charity directly for any questions you may have.
ALS Association Oregon and SW Washington has earned a 100% for the Accountability & Finance beacon. See the metrics below for more information.
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
This Accountability & Finance score represents IRS Form 990 data up until FY 2021, which is the most recent Form 990 currently available to us.
Learn more
Full Credit
Partial Credit
No Credit
Not ApplicableBoard Composition - 18/18 - 25/25 ptsBoard Composition - 18/18 - 25/25 pts
Charity Navigator looks for at least 3 board members, with more than 50% of those members identified as independent (not salaried).
The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters.
Source: IRS Form 990
Independent Audit or Financial Review - Audited - 20/20 ptsIndependent Audit or Financial Review - Audited - 20/20 pts
An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:
| Total Revenue Amount | Expectation to Receive Credit |
|---|---|
| $1 million or higher | Expected to complete an audit |
| $500,000 - $1 million | Expected to complete an audit, review, or compilation |
| Less than $500,000 | No expectation (removed from scoring methodology) |
Source: IRS Form 990
Conflict of Interest Policy - Listed - 3/3 ptsConflict of Interest Policy - Listed - 3/3 pts
Charity Navigator looks for the existence of a conflict of interest policy on the Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Board Meeting Minutes - Documented - 3/3 ptsBoard Meeting Minutes - Documented - 3/3 pts
Charity Navigator looks to confirm on the Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Document Retention and Destruction - Listed - 3/3 ptsDocument Retention and Destruction - Listed - 3/3 pts
Charity Navigator looks for the existence of a document retention and destruction policy per the Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Whistleblower Policy - Listed - 3/3 ptsWhistleblower Policy - Listed - 3/3 pts
Charity Navigator looks for the existence of a whistleblower policy per the Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Website - Listed - 3/3 ptsWebsite - Listed - 3/3 pts
Charity Navigator looks for a website on the Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
Full CreditPartial CreditNo CreditNot ApplicableLiabilities to Assets Ratio - 11.85% - 15/15 ptsLiabilities to Assets Ratio - 11.85% - 15/15 pts
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990). This ratio is an indicator of an organization’s solvency and/or long-term sustainability.
| Liabilities to Assets Ratio | Amount of Credit Received |
|---|---|
| Less than 50% | Full Credit |
| 50% - 59.9% | Partial Credit |
| 60% or more | No Credit |
Source: IRS Form 990
Program Expense Ratio - 82.40% - 25/25 ptsProgram Expense Ratio - 82.40% - 25/25 pts
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
| Program Expense Percentage | Amount of Credit Received |
|---|---|
| 70% or higher | Full Credit |
| 60% - 69.9% | Partial Credit |
| 50% - 59.9% | Zero Points for Program Expense Score |
| Below 50% | Zero Points for Both Program Expense AND Liabilities to Assets Scores |
Source: IRS Form 990
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
No Data Available
Key Persons data is currently unavailable for this organization. This data is only available if this charity has at least one year of electronically-filed Form 990 data filed within the last six years.
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Activities:
Discussion groups, forums, panels lectures, etc. (BMF activity code: 123)
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Affiliation:
Subordinate - the organization is a subordinate in a group ruling. (BMF affiliation code: 9)
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (ALS Association Oregon and SW Washington) or EIN (680516066) in the 'Search Term' field.
This organization was impacted by COVID-19 in a way that effected their financial health in 2020. This normally would have reduced their star rating. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them, and doing this pauses our revision of their rating. Charities may submit their own pandemic responses through their nonprofit portal.
ALS Association Oregon and SW Washington reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Revenue
Grants Received
Grants Sent
How COVID-19 impacted the organization's operations financially:
A significant portion of our revenue is through in-person events. We did successfully continue our programming with virtual options, but the loss in participation and fundraising was substantial during the last two years. Thankfully other fundraising initiatives and a strong individual donor response increased to bridge the gap during that period.
How COVID-19 impacted the organization's delivery of programs:
We prioritized the health and safety of people with ALS and that resulted in the initial cancelling and delay of some of our programs before we could pivot fully with virtual options. This includes some support groups and ALS clinic appointments.
How this organization adapted to changing conditions caused by COVID-19:
We have adapted our care services into a new hybrid of both in-person options and online options that allows for telemedicine appointments and virtual support groups as well as online communications with the care services teams. We are committed to this model moving forward and are investing in more technology and staff training to meet the demands of this new model.
Innovations the organization intends to continue permanently after the pandemic:
We will continue some of our virtual support group meetings, educational topic calls and telemedicine appointments for ALS clinic. These options did not exist as readily before the pandemic. We know these online options are preferrable to some of our community and we will continue offering them to meet the needs and educational interests of our community.
Not Currently Scored
ALS Association Oregon and SW Washington cannot currently be evaluated by our Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
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ALS Association Oregon and SW Washington reported its three largest programs on its FY 2021 Form 990 as:
Spent in most recent FY
Percent of program expenses
OUTREACH AND ADVOCACYAS ONE OF 39 CHAPTERS AFFILIATED WITH THE NATIONAL ALS ASSOCIATION, THE OREGON AND SOUTHWEST WASHINGTON CHAPTER PROVIDES ONGOING FINANCIAL SUPPORT FOR THE NATIONAL ALS ASSOCIATION ... (More)
OUTREACH AND ADVOCACYAS ONE OF 39 CHAPTERS AFFILIATED WITH THE NATIONAL ALS ASSOCIATION, THE OREGON AND SOUTHWEST WASHINGTON CHAPTER PROVIDES ONGOING FINANCIAL SUPPORT FOR THE NATIONAL ALS ASSOCIATION TO SUPPORT FEDERAL PUBLIC POLICY INITIATIVES TO IMPROVE THE LIVES OF FAMILIES LIVING WITH ALS, OUTREACH EFFORTS TO RAISE PUBLIC AWARENESS ABOUT ALS, AS WELL AS CUTTING EDGE GLOBAL RESEARCH WORKING TOWARD AN EFFECTIVE TREATMENT AND ULTIMATELY A CURE FOR ALS.THE ORGANIZATION CONTRIBUTED TO A NATIONAL EFFORT THAT FUNDED SIGNIFICANT PROJECTS TO UNDERSTAND THE CAUSE OF ALS, THE DISEASE MECHANISM, GENETICS, BIOMARKERS FOR ALS, ENVIRONMENTAL FACTORS, AND TRANSLATIONAL RESEARCH TO MOVE THERAPY IDEAS FROM THE LAB BENCH TO THERAPY. RESEARCH SUPPORT WENT TO 140 PLUS RESEARCH GRANTS AROUND THE GLOBE. PUBLIC POLICY ACCOMPLISHMENTS DURING THE YEAR ENDED JANUARY 31, 2021 INCLUDE ONLINE ADVOCACY OF PEOPLE WITH ALS TO CONNECT WITH LEGISLATORS IN WASHINGTON DC TO ADVOCATE FOR THE NATIONAL ALS REGISTRY, THE ALS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, PASSING THE ALS DISABILITY ACCESS ACT AND PROMOTING FEDERAL SUPPORT FOR ALS RESEARCH. THE ORGANIZATION PROVIDED OVER $456,000.00 TO SUPPORT THESE NATIONAL PUBLIC POLICY AND RESEARCH EFFORTS. AWARENESS EVENTS SPONSORED BY THE ORGANIZATION INCLUDE THE WALK TO DEFEAT ALS, HIKE TO DEFEAT ALS, SKI TO DEFEAT ALS, RIDE TO DEFEAT ALS, MAY ALS AWARENESS MONTH, CREATION OF PUBLIC SERVICE ANNOUNCEMENTS, MISSION CONNECTED SOCIAL MEDIA, AND CREATION OF VIDEOS THAT ILLUSTRATE WHAT ALS IS AND HOW CHAPTER SERVICES CAN HELP. THIS YEAR DUE TO COVID MOST ALL ACTIVITIES AFTER MARCH 2020 PIVOTED TO VIRTUAL. NOVEMBER NATIONAL FAMILY CAREGIVER MONTH ACTIVITIES SERVE AS OPPORTUNITIES TO BRING HOPE AND COMMUNITY TO PEOPLE WITH ALS AND THEIR FAMILIES. BY COMING TOGETHER AT AWARENESS EVENTS, PEOPLE WITH ALS AND THEIR FAMILIES AS WELL AS THOSE WHO HAVE LOST A LOVED ONE TO ALS FIND STRENGTH AND SUPPORT WITH ONE ANOTHER. THE LARGE NUMBER OF PEOPLE WHO PARTICIPATE IN THESE EFFORTS RAISE THE PROFILE OF ALS ACROSS THE CHAPTER AND ENGAGE COMMUNITY AWARENESS OF THE SERVICES AND RESOURCES AVAILABLE FROM THE OREGON AND SOUTHWEST WASHINGTON CHAPTER. RESEARCH IS A CRITICAL PART OF THE CHAPTER MISSION. AS PART OF THE EFFORT TO INCREASE THE KNOWLEDGE OF ALS AND THOSE AFFECTED, THE ORGANIZATION PROMOTES DEFEAT ALS EVENTS THAT PROMOTE THE NATIONAL ALS REGISTRY. THIS EFFORT IS VITAL TO UNDERSTAND THE FULL INCIDENCE AND PREVALENCE OF ALS ACROSS OREGON AND SOUTHWEST WASHINGTON SO THAT WE CAN IDENTIFY AND STRATEGICALLY PLAN TO SERVE AS MANY FAMILIES LIVING WITH ALS IN OUR CHAPTER TERRITORY AS POSSIBLE (Less)
Spent in most recent FY
Percent of program expenses
INDEPENDENCE PROGRAMS TO SUPPORT AND EMPOWER PEOPLE LIVING WITH ALS TO LIVE INDEPENDENTLY AND AS FULLY AS POSSIBLE, THE ORGANIZATION PROVIDES SERVICES THAT HELP PEOPLE WITH EQUIPMENT AND TOOLS TO ASSI ... (More)
INDEPENDENCE PROGRAMS TO SUPPORT AND EMPOWER PEOPLE LIVING WITH ALS TO LIVE INDEPENDENTLY AND AS FULLY AS POSSIBLE, THE ORGANIZATION PROVIDES SERVICES THAT HELP PEOPLE WITH EQUIPMENT AND TOOLS TO ASSIST IN THEIR DAILY LIVES. THE MEDICAL EQUIPMENT LOAN PROG (Less)
Spent in most recent FY
Percent of program expenses
ALS CLINICS AND CERTIFIED CENTER SUPPORT TO SUPPORT THE HIGHEST QUALITY HEALTHCARE FOR PEOPLE WITH ALS, THE ORGANIZATION PARTNERS WITH AND SUPPORTS COMMUNITY HEALTHCARE PROVIDERS IN OFFERING ALS SPECI ... (More)
ALS CLINICS AND CERTIFIED CENTER SUPPORT TO SUPPORT THE HIGHEST QUALITY HEALTHCARE FOR PEOPLE WITH ALS, THE ORGANIZATION PARTNERS WITH AND SUPPORTS COMMUNITY HEALTHCARE PROVIDERS IN OFFERING ALS SPECIALTY MULTIDISCIPLINARY CLINICS. THESE ONE-STOP SHOPS ARE (Less)
ALS Association Oregon and SW Washington has earned a 80% for the Culture & Community beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Learn more
Full CreditPartial CreditNo CreditNot ApplicableConstituent Feedback - Data Available - UnscoredConstituent Feedback - Data Available - Unscored
This organization reported that it is collecting feedback from the constituents and/or communities it serves. However, it did not respond to one or more survey questions, and therefore is not eligible for a score on this metric. (View our beacon methodology.) Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective.
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 does your organization share the feedback you got from the people you serve?
Our staff, Our board
What challenges does your organization face in collecting feedback from the people you serve?
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
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
Note: The organization did not respond to this question.
Equity Practices - Data Available - 80/100 ptsEquity Practices - Data Available - 80/100 pts
100% of beacon score
This organization's score of 80 is a passing score. The organization reported that it is implementing 3 Equity Practices. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Equity Practices (0/7) | |
|---|---|
The organization did not respond to this question. | |
Equity Policies and Procedures (3/7) | |
|---|---|
We use a vetting process to identify vendors and partners that share our commitment to race equity. | |
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions. | |
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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability. | |
We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team. | |
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. | |
ALS Association Oregon and SW Washington has earned a 100% for the Leadership & Adaptability beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Learn more
Full CreditPartial CreditNo CreditNot ApplicableMission - 10/10 ptsMission - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
LEADING THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL RESEARCH AND NATIONWIDE ADVOCACY WHILE ALSO EMPOWERING PEOPLE WITH ALS (LOU GEHRIGS DISEASE) AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT.
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Create a world without ALS. Core Values: COMPASSION – INTEGRITY – URGENCY Guiding Principles are: People with ALS and their families come first One team, one vision, one mission Accountability and transparency Diversity and inclusion Open communication and dialogue Innovation Collaboration
Source: Nonprofit submitted responses
Goals - 20/20 ptsGoals - 20/20 pts
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Discover new life-extending treatments continued investment in research and education.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: Provide people with ALS and their families access to consistent care, treatment and services
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Goal Three: Advocate to educate and mobilize Congress to discover new treatments for ALS
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
The ALS Association Oregon and SW Washington Chapter consistently offers all staff professional development opportunities to enhance team performance for the benefit of our mission. Recent professional development includes – • Two Directors participating in an accredited 12 week course on program evaluation culminating in participants earning a Certificate form Program Evaluation from the Portland State Institute for Nonprofit Management. • A Director level staff member participating in a 12 week could on Managerial Resilience for NonProfit Managers offered jointly by Willamette Valley Development Officer and the Portland State Institute for Nonprofit Management. • Numerous Continuing Education seminars for staff within their professional disciplines, Social Work, Speech Language Pathology, Communications, and Development. • Staff wide education on Diversity, Equity and Inclusion by participating in a 4 day seminar on Reframing Racism offered by the Center for Equity and Inclusion.
Mobilizing for Mission - 15/15 ptsMobilizing for Mission - 15/15 pts
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
Advocacy and ALS Association Network: The ALS Association is a national network divided into regional chapters. This allows for a unified and powerful voice in advocacy efforts and with research funding. This network of chapters also allows for shared resources and trainings among staff peers. Raising Awareness, Partnerships and Community Building: The Walk to Defeat ALS engages thousands of Oregon and Washington families and businesses each year. There are 6 walk events in our region and their goals are to fundraise for ALS services and research, empower people with ALS and raise community awareness. Leadership Activities: Our chapter is the main voice and leader in ALS information for our community. We host a research symposium, educational topic calls and caregiver trainings throughout the year for our constituents.
Adaptability Story - 30/30 ptsAdaptability Story - 30/30 pts
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
We initiated an ALS COVID Crisis Support Program to offer education, financial assistance, communication and assistive technology and caregiving support to the over 500 people living with ALS during the pandemic. Through the emergency assistance funds, we provided financial assistance to families facing ALS who were negatively impacted by the COVID-19 pandemic. The funds reduced the financial burden of living with ALS for 30 families. Funds were utilized for the cost of medical care and assistance. Through ALS COVID-19 virtual education, we hosted 12 ALS educational seminars, available on our website and social media. These seminars increased knowledge and safe decision making surrounding ALS and COVID-19. Through virtual communication and assistive technology consultations and trainings, we provided assessments and trainings to ensure that people living with ALS were able to maintain their communication abilities. These services were especially essential during the COVID-19 pandemic, since we also provided assistance with accessing the internet and virtual communication services. Through communication and assistive technology support, people living with ALS had increased independence and quality of life. Through our caregiver support services, we provided virtual caregiver-specific support groups as well as resources and emotional support through virtual communications. These services were especially vital during COVID-19 since caregivers were facing increased isolation and reduced respite.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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