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

  http://www.alsa.org

  1300 Wilson Boulevard
Suite 600
Arlington VA 22209 

  888-949-2577


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:

This score represents Form 990 data from 2020, the latest year published by the IRS. 

View this organization’s historical ratings.


Back to Overall

Star Rated Report

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Program Expense

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:

  • Full Credit: There has been no diversion of assets within the last two years.

  • Partial Credit: There has been a diversion of assets within the last two years and the charity has used Schedule O on the Form 990 to explain: the nature of the diversion, the amount of money or property involved and the corrective action taken to address the matter. In this situation, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: There has been a diversion of assets within the last two years and the charity's explanation on Schedule O is either non-existent or not sufficient. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
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.

  • Full Credit: The charity's audited financials were prepared by an independent accountant with an audit oversight committee.

  • Partial Credit: The charity's audited financials were prepared by an independent accountant, but it did not have an audit oversight committee. In this case, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: The charity did not have its audited financials prepared by an independent accountant. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
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:

  • Yes: This charity has a written donor privacy policy published on its website, which states unambiguously that (1) it will not share or sell a donor's personal information with anyone else, nor send donor mailings on behalf of other organizations or (2) it will only share or sell personal information once the donor has given the charity specific permission to do so.

  • Opt-out: The charity has a written privacy policy published on its website which enables donors to tell the charity to remove their names and contact information from lists the charity shares or sells. How a donor can have themselves removed from a list differs from one charity to the next, but any and all opt-out policies require donors to take specific action to protect their privacy.
  • No: This charity either does not have a written donor privacy policy in place to protect their contributors' personal information, or the existing policy does not meet our criteria.

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

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 PublishedForm 990 FYEOverall ScoreOverall Rating
Rating Version: 2.1
3/1/20212020 92.23
11/1/20192019 88.85
2/1/20192018 95.21
2/1/20182017 96.48
2/1/20172016 94.62
6/1/20162015 94.23
Rating Version: 2.0
8/1/20152015 94.57
9/1/20142014 90.77
6/1/20142013 90.73
5/1/20142013 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.

3/1/20132012 83.30
9/1/20122011 77.53
2/1/20122011 81.24
9/20/20112010 86.57
Rating Version: 1.0
2/1/20112010 74.64
7/1/20102009 83.43
2/1/20092008 90.20
12/1/20072007 90.49
12/1/20062006 83.70
12/1/20052005 88.48
12/1/20042004 88.93
11/1/20032003 90.65
4/15/20032002 90.08
10/15/20022001 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.

Learn more about Impact & Results.

Do you work at The ALS Association, National Office? Join the waitlist for an updated Impact & Results score.


Back to Overall

Additional Information

Unscored

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Largest Programs

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.


Back to Overall

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

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


Back to Overall

Culture & Community Report

100

of 100 points

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Constituent Feedback

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

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