Mission: Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to ... (More)
The ALS Association, National Office is a 501(c)(3) organization, with an IRS ruling year of 1990, and deductibiltiy of donations depends on various factors.
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Contact Information
1300 Wilson Boulevard
Suite 600
Arlington VA 22209
You are viewing this organization's new Charity Navigator profile page. To view the legacy version, click here.
Star Rating System by Charity Navigator
Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.
Exceptional
This charity's score is 92.23, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity.
This score is calculated from two sub-scores:
Finance: 89.44 View details
Accountability & Transparency: 97.00 View details
This score represents Form 990 data from 2020, the latest year published by the IRS.
View this organization’s historical ratings.
Star Rated Report
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Program Expense Ratio
80.3%
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. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Administrative Expenses
6.6%
As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Expenses
12.9%
This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Liabilities to Assets Ratio
7.9%
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
Fundraising Efficiency
$0.17
The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Working Capital Ratio
2.35 years
Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.
Source: IRS Form 990
Program Expense Growth
4.79%
We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.
Source: IRS Form 990
Governance
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Governance: | |
|---|---|
| Independent Voting Board Members ... (More) | |
| No Material Diversion of Assets ... (More) A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
| |
| Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
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| Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) | |
| Documents Board Meeting Minutes ... (More) | |
| Distributes 990 to Board Before Filing ... (More) | |
| Compensates Board ... (More) |
Policies
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
| Policies: | |
|---|---|
| Conflict of Interest ... (More) | |
| Whistleblower ... (More) | |
| Records Retention and Destruction ... (More) | |
| CEO Compensation Process ... (More) | |
| Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) | Partial |
Transparency
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.
Sources Include: IRS Form 990 and organization's website
| Transparency: | |
|---|---|
| CEO Salary Listed on 990 ... (More) | |
| Board of Directors Listed on Website ... (More) | |
| Key Staff Listed on Website ... (More) | |
| Audited Financial Statements on Website ... (More) | |
| Form 990 Available on Website ... (More) |
Additional Information
Unscored
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Total Revenue and Expenses
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Salary of Key Persons
Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Calaneet Balas, President & CEO
$358,632 (0.86% of Total Expenses)
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2021
Business Master File Data
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:
Central - the organization is a parent (group ruling) and is not a church or 501(c)(1) organization. (BMF affiliation code: 6)
Data Sources: IRS Forms 990
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 view this organization's Forms 990 on the IRS website (if any are available).
Pandemic Response
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. Charities may submit their own pandemic responses through their nonprofit portal.
The ALS Association, National Office reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Revenue
Grants Sent
Balance Sheet
How COVID-19 impacted the organization's operations financially:
With pandemic restrictions, the Association and its chapters were unable to hold in person events which generate a significant amount of revenue for chapters. This revenue is shared with the National office as support through revenue share. Additionally, with economic uncertainty, regular donations decreased as well. When adjusting for a non-renewable major gift, operating revenue was down approximately 15%. We were able to leverage non-operating income such as investments and bequests to help offset this shortfall. By taking advantage of government programs like Payroll Protection Program (PPP) loans and the Employee Retention Credit (ERC) Program, the Association was able to avoid staff reductions.
How COVID-19 impacted the organization's delivery of programs:
One of the Association’s main concerns during the pandemic was to limit disruption to core mission activity – like care service support to ALS patients. When considering revenue shortfalls throughout the Association, our biggest concern was losing staff that provided this important activity. As a result, the Association passed a resolution to maintain care service functions by avoiding staff reductions. The National Office and its chapters took advantage of PPP loans and ERC to minimize staff reductions. Additionally, the Association earmarked a portion of its reserves to help chapters in financial need. In terms of research activity, the Association decided to delay new research obligations given the uncertainty with revenue generation, while continuing to honor existing research obligations. With many research institutions unable to work during the initial stages of the pandemic we also noted shifts in the timing of work performed on existing research projects.
How this organization adapted to changing conditions caused by COVID-19:
With revenue uncertainty being a key consideration, the leadership of the Association ensured that Patient/Care Service service functions were prioritized. The pandemic dictated changes to how we served our patients due to the need to isolate and avoid exposure to the virus, which could be deadly to an ALS patient with diminished breathing capacity. The Association leveraged the use of on-line meeting technology to host support groups or general meetings with patients. The use of this technology allowed care to continue while minimizing the strain on patients to travel or expose themselves to the virus. The use of this technology also allowed us to host virtual conferences (like our Advocacy and Care Service conferences) that allowed for more participation than we historically had when the events were held in person.
Innovations the organization intends to continue permanently after the pandemic:
The Association will continue to leverage the use of on-line technology to help provide patient support. This technology takes away some of the challenges an ALS patient may have to participate in our programs. It helps provide access to programs and services that one may not have had pre-pandemic.
Historical Ratings
| Date Published | Form 990 FYE | Overall Score | Overall Rating |
| Rating Version: 2.1 | |||
| 3/1/2021 | 2020 | 92.23 | |
| 11/1/2019 | 2019 | 88.85 |  |
| 2/1/2019 | 2018 | 95.21 | |
| 2/1/2018 | 2017 | 96.48 | |
| 2/1/2017 | 2016 | 94.62 | |
| 6/1/2016 | 2015 | 94.23 | |
| Rating Version: 2.0 | |||
| 8/1/2015 | 2015 | 94.57 | |
| 9/1/2014 | 2014 | 90.77 | |
| 6/1/2014 | 2013 | 90.73 | |
| 5/1/2014 | 2013 | 89.70 | |
This organization received multiple star ratings within this fiscal year, due to an update to its Accountability and Transparency data and/or the receipt of an amended Form 990. | |||
| 3/1/2013 | 2012 | 83.30 | |
| 9/1/2012 | 2011 | 77.53 |  |
| 2/1/2012 | 2011 | 81.24 | |
| 9/20/2011 | 2010 | 86.57 | |
| Rating Version: 1.0 | |||
| 2/1/2011 | 2010 | 74.64 | |
| 7/1/2010 | 2009 | 83.43 | |
| 2/1/2009 | 2008 | 90.20 | |
| 12/1/2007 | 2007 | 90.49 | |
| 12/1/2006 | 2006 | 83.70 | |
| 12/1/2005 | 2005 | 88.48 | |
| 12/1/2004 | 2004 | 88.93 | |
| 11/1/2003 | 2003 | 90.65 | |
| 4/15/2003 | 2002 | 90.08 | |
| 10/15/2002 | 2001 | 89.84 | |
Previous: Finance & Accountability / Next: Leadership & Adaptability
Impact & Results
This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
Impact & Results Score
Not Currently Scored
The ALS Association, National Office cannot currently be evaluated by our Encompass Rating 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.
Do you work at The ALS Association, National Office? Join the waitlist for an updated Impact & Results score.
Additional Information
Unscored
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Largest Programs
The ALS Association, National Office reported its three largest programs on its FY 2020 Form 990 as:
$18,352,163
Spent in most recent FY
55%
Percent of program expenses
Research Programs
$10,463,835
Spent in most recent FY
31%
Percent of program expenses
Patient & Community Services
$4,052,273
Spent in most recent FY
12%
Percent of program expenses
Public and Professional Education
Previous: Impact & Results / Next: Culture & Community
Leadership & Adaptability
This score 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.
Leadership & Adaptability Score
100
out of 100
The score earned by The ALS Association, National Office is a passing score. This score has no effect on the organization's Star Rating.
Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.
Leadership & Adaptability Report
100
of 100 points
Mission
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s 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.
Source: Nonprofit submitted responses
Vision
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Create a world without ALS.
Source: Nonprofit submitted responses
Strategic Goals
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Finding new treatments and cures.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: Optimizing current treatments and care.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Three: Prevent or delay the harms associated with ALS
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Source: Nonprofit submitted responses
Leadership Development
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
The Association hosts an annual Leadership Conference that provides opportunities for all Association employees and volunteers to listen to presentations about what is happening with ALS, the Association, and how staff can further engage. The Association also sponsors professional memberships for its staff and supports attendance at workshops, conferences and webinars that are designed to improve their current skills and further develop leadership skills. The Association also has an online learning management system available to all employees that provides instructor led workshops on professional and leadership development.
Source: Nonprofit submitted responses
Mobilizing for Mission
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
What are this organization’s external mobilizaton efforts?
The ALS Association engages with stakeholders and partners to build awareness, partner on key initiatives, and mobilize into action. The ALS Association works with physicians and clinics. Our Certified Treatment Centers of Excellence and Recognized Treatment Centers provide people living with ALS with specialized care. Our research partnerships with academia, industry, government, and other nonprofit organizations, have led to globally shared data, protocols, and research samples to accelerate research progress. We bring together perspectives from industry, academia, government, and people with ALS to inform major programs and policies in the ALS space. Our advocacy work focuses on educating and mobilizing all policymakers in a nonpartisan fashion. We host events that bring together the ALS community to raise awareness of ALS as well as funds to support our activities. We share information via social media, newsletter, blog, and a weekly podcast.
Source: Nonprofit submitted responses
Story of Adaptability
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
The ability to adapt was important for the Association over the past years as we faced the challenges of the pandemic. It forced us to pivot a lot of our activities to a virtual format, which has resulted in increased participation in some activities while decreasing some burdens on our patients. We saw decreases in fundraising as an Association because of the inability to host fundraising events in person. By prioritizing mission activities and taking advantage of government programs like PPP and the ERC, we were able to minimize the disruption to our service delivery initiatives throughout the Association. These challenges helped inform the Association’s Board of Trustees 2021 decision to move the organization from a federated structure to a unified one. This decision was made first and foremost to ensure that all people with ALS and their families receive support regardless of where in the U.S. they live. This change will allow the Association to better leverage its investments in technology and gain efficiencies in administrative spending and fundraising programs to help drive more funding towards mission activity.
Source: Nonprofit submitted responses
Additional Information
Unscored
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Organization Leadership
Calaneet Balas
President, CEO
Scott Kauffman
Chairman
Previous: Leadership & Adaptability
Culture & Community
This score provides an assessment of the organization's culture and connectedness to the community it serves. Learn more about how and why we rate Culture & Community.
Culture & Community Score
100
out of 100
The ALS Association, National Office has earned a passing score. This score has no effect on the organization's Star Rating. The organization provided data about how it listens to constituents (Constituent Feedback) (see report below).
The Culture & Community Beacon is comprised of the following metrics:
Constituent Feedback: 100/100 (100% of beacon score)
Diversity, Equity, & Inclusion: Not Scored
Culture & Community Report
100
of 100 points
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Diversity, Equity, & Inclusion
This organization has not provided information regarding the diversity, equity and inclusion (DEI) practices it is presently implementing. As such, the organization has not earned a score on this metric. Charity Navigator believes nonprofit organizations implementing effective DEI policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Methodology
We are utilizing data collected by Candid to document and assess the DEI practices implemented by the organization. Nonprofit organizations are encouraged to fill out the Equity Strategies section of their Candid profiles to receive a rating.
Learn more about the methodology.
Constituent Feedback
100/100 points
100% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. 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.
View this organization's Constituent Feedback Practices
Methodology
We've partnered with Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.
Learn more about the methodology.
Analysis and Research
Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Below you can find more information about the metrics we currently evaluate in this beacon and their relevance to nonprofit performance.
Constituent Feedback
Diversity, Equity, and Inclusion
