Impact & Measurement
Accountability & Finance
Culture & Community
Leadership & Adaptability
Muscular Dystrophy Association
Chicago IL | IRS ruling year: 1952 | EIN: 13-1665552 
An EIN is a unique nine-digit number that identifies a business for tax purposes.
An EIN is a unique nine-digit number that identifies a business for tax purposes.Organization Mission
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromu ... (More)
Rating Information
Needs Improvement
This charity's score is 69%, earning it a Two-Star rating.
This overall score is calculated from multiple beacon scores, weighted as follows: 74% Accountability & Finance, 10% Leadership & Adaptability, 16% Culture & Community. Learn more about our criteria and methodology.
Historical Ratings 
Historical Ratings 
Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Measurement. The historic rating mainly reflects a version of today’s Accountability and Finance score. More information on our previous rating methodologies can be found on our rating methodology page.
| Date Published | Overall Rating | ||
| 6/1/2021 |  | ||
| 12/1/2020 | | ||
| 3/1/2020 | | ||
 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. | |||
| 6/1/2019 | | ||
| 4/1/2019 | | ||
| 5/1/2018 | | ||
| 3/1/2017 | | ||
| 6/1/2016 | | ||
| 12/22/2015 | | ||
| 5/1/2015 | | ||
| 3/1/2014 | | ||
| 3/1/2013 | | ||
| 9/1/2012 | | ||
| 2/1/2012 |  | ||
| 9/20/2011 | | ||
| 3/1/2011 | | ||
| 3/1/2010 | | ||
| 3/1/2008 | | ||
| 3/1/2006 | | ||
| 2/1/2005 | | ||
| 2/1/2004 | | ||
| 4/15/2003 | | ||
| 10/15/2002 | | ||
Rating Report
Accountability & Finance
Score
60
Most Recent Fiscal Year:
FY 2022
FY 2022
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
Key Accountability Metrics
Full Credit
Partial Credit
No CreditMajority Independent Board Members - 100% independent members6 out of 6 points
Majority Independent Board Members - 100% independent members6 out of 6 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. We check to see that a majority of board members are identified as independent on their tax form.
Source: IRS Form 990
Independent Board Size - 18 independent members6 out of 6 points
Independent Board Size - 18 independent members6 out of 6 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three independent board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members
Source: IRS Form 990
Financial Statements - Audit and Oversight Committee12 out of 12 points
Financial Statements - Audit and Oversight Committee12 out of 12 points
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 |
| $2 million or higher and 40% or higher donor support | Expected to complete an audit and have an audit oversight committee |
| $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
Material Diversion of Assets - None12 out of 12 points
Material Diversion of Assets - None12 out of 12 points
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 — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.
Source: IRS Form 990
Tax Form Disclosures and Policies
Full CreditPartial CreditNo CreditWebsite Listed on Tax Form - Listed3 out of 3 points
Website Listed on Tax Form - Listed3 out of 3 points
Charity Navigator looks for a website on the IRS 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
Conflict of Interest Policy - Listed5 out of 5 points
Conflict of Interest Policy - Listed5 out of 5 points
Charity Navigator looks for the existence of a conflict of interest policy on the IRS 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
Whistleblower Policy - Listed5 out of 5 points
Whistleblower Policy - Listed5 out of 5 points
Charity Navigator looks for the existence of a whistleblower policy per the IRS 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
Document Retention and Destruction - Listed5 out of 5 points
Document Retention and Destruction - Listed5 out of 5 points
Charity Navigator looks for the existence of a document retention and destruction policy per the IRS 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
Documents Board Meeting Minutes - Yes3 out of 3 points
Documents Board Meeting Minutes - Yes3 out of 3 points
Charity Navigator looks to confirm on the IRS 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
Compensates Board - No5 out of 5 points
Compensates Board - No5 out of 5 points
The IRS requires that the charity lists any compensation paid to the charity's governing body members on the IRS Form 990. Furthermore, all governing body members must be listed whether or not they are compensated. Our analysts verify that the charities complied with the Form 990 instructions and that no board members are compensated simply for being on the board.
Source: Nonprofit's Website
Tax Form Distributed to Board Before Filing - Listed3 out of 3 points
Tax Form Distributed to Board Before Filing - Listed3 out of 3 points
Providing copies of the IRS Form 990 to the governing body prior to filing is considered a best practice, as it allows for thorough review by the individuals charged with overseeing the organization. The Form 990 asks the charity to disclose whether or not it has followed this best practice.
Loans to/from Officers - None5 out of 5 points
Loans to/from Officers - None5 out of 5 points
Making loans to related parties, such as key officers, staff, or Board members, is not standard practice in the sector as it diverts the charity's funds away from its charitable mission and can lead to real and perceived conflict-of-interest problems.
The IRS requires charities to disclose on their Form 990 any loans to or from current and former officers, directors, trustees, key employees, and other "disqualified persons." Some state laws go so far as to prohibit loans to board members and officers.
Although employees and trustees are permitted to make loans to charities, this practice can also result in real and/or perceived conflict of interest problems for the charity. Furthermore, it is problematic because it indicates that the organization is not financially secure. Our analysts check to see if any loans have been made.
Reports CEO and Compensation on Tax Form - Listed5 out of 5 points
Reports CEO and Compensation on Tax Form - Listed5 out of 5 points
Charities must list their CEO's name and compensation on their tax forms, an issue of concern for many donors. Our analysts check to be sure that the charities complied with the IRS Form 990 instructions and include this information.
CEO Compensation Process - Listed5 out of 5 points
CEO Compensation Process - Listed5 out of 5 points
This process indicates that the organization has a documented policy that it follows yearly. The policy should indicate that an objective and independent review process of the CEO's compensation has been conducted, including benchmarking against comparable organizations. We check to be sure that the charity has reported on its IRS Form 990 its process for determining its CEO pay.
Website Disclosures
Full CreditPartial CreditNo CreditTax Form Posted on Nonprofit's Website - Listed5 out of 5 points
Tax Form Posted on Nonprofit's Website - Listed5 out of 5 points
For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.
Source: IRS Form 990
Audit Posted on Nonprofit's Website - Listed5 out of 5 points
Audit Posted on Nonprofit's Website - Listed5 out of 5 points
Charity Navigator checks the charity's website to see if it has published its audited financial statements for the fiscal year represented by the most recently filed IRS Form 990. Donors need easy access to this financial report to help determine if the organization is managing its financial resources well. We are rating charities on whether or not they publish their audit on their website.
Source: Nonprofit's Website
Staff Members Listed on Nonprofit's Website - Listed3 out of 3 points
Staff Members Listed on Nonprofit's Website - Listed3 out of 3 points
Donors and other stakeholders need to know who runs the organization day-to-day. While key staff should be reported on the IRS Form 990, the charity's staff may have changed since then. The charity typically reflects the most current members on the website.
Source: Nonprofit's Website
Board Members Posted on Nonprofit's Website - Listed5 out of 5 points
Board Members Posted on Nonprofit's Website - Listed5 out of 5 points
The IRS requires that the charity lists any compensation paid to the charity's governing body members on the IRS Form 990. Furthermore, all governing body members must be listed whether or not they are compensated. Our analysts verify that the charities complied with the Form 990 instructions and that no board members are compensated simply for being on the board.
Source: Nonprofit's Website
Donor Privacy Policy Posted on Nonprofit's Website - Listed, but is opt-out1 out of 2 points
Donor Privacy Policy Posted on Nonprofit's Website - Listed, but is opt-out1 out of 2 points
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 and if its tw-contents are sufficient to protect the donor's information.
Source: Nonprofit's Website
Financial Metrics
Full CreditPartial CreditNo CreditLiabilities to Assets: Ratio - 89.42%0 out of 25 points
Liabilities to Assets: Ratio - 89.42%0 out of 25 points
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.
Source: IRS Form 990
Program Expense: Ratio - 57.06%9 out of 25 points
Program Expense: Ratio - 57.06%9 out of 25 points
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
Source: IRS Form 990
Fundraising Efficiency: Ratio - $0.3810 out of 25 points
Fundraising Efficiency: Ratio - $0.3810 out of 25 points
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 - 0.11 years2 out of 25 points
Working Capital: Ratio - 0.11 years2 out of 25 points
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 IRS Form 990. 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
Additional Information
Total Revenue and Expenses - Data Available
Total Revenue and Expenses - Data Available
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 - Data Available
Salary of Key Persons - Data Available
Presented here are up to five of this organization's highest compensated employees. 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
Donald Wood, President & Ceo
$522,923
Michael Kennedy, Treasurer & Cfo
$331,534
Kristine Welker, Chief Of Staff
$304,472
Sharon Hesterlee, Chief Research Officer
$229,015
Brian Beirne, Vp Of Multi-channel Market
$214,346
Source: IRS Form 990 (page 7), filing year 2022
IRS Published Data (Business Master File) - Data Available
IRS Published Data (Business Master File) - Data Available
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
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:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
Data Sources (IRS Forms 990) - Data Available
Data Sources (IRS Forms 990) - Data Available
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage accountability and finance 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 (Muscular Dystrophy Association) or EIN (131665552) in the 'Search Term' field.
Impact & Measurement
Not Currently Scored
Muscular Dystrophy Association cannot currently be evaluated by our Impact & Measurement 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.
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.
Culture & Community
Score
87
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Metrics
Full CreditPartial CreditNo CreditConstituent Feedback - Data Available100/100 points
Constituent Feedback - Data Available100/100 points
33.33% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. The methodology leveraged for Constituent Feedback is based on The Core Principles of Constituent Feedback, which describes listening and responding well to feedback. Charity Navigator participates in a consortium with other feedback experts and leading nonprofit infrastructure platforms to drive Constituent Feedback's advancement, promotion, and data collection.
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
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
Equity Practices - Data Available81/100 points
Equity Practices - Data Available81/100 points
66.67% of beacon score
This organization's score of 81 is a passing score. The organization reported that it is implementing 5 Equity Practices.
The Equity Strategies Checklist, developed by Equity in the Center, consists of practices and policies that promote racial equity in operations and programs. This data is collected in partnership with Candid.
| Equity Practices (4/7) | |
We review compensation data across the organization (and by staff levels) to identify disparities by race. | |
We ask team members to identify racial disparities in their programs and/or portfolios. | |
We analyze disaggregated data and root causes of race disparities that impact the organization/'s programs, portfolios, and the populations served. | |
We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support. | |
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders. | |
We disaggregate data by demographics, including race, in every policy and program measured | |
We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization. | |
| Equity Policies and Procedures (1/7) | |
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. | |
Leadership & Adaptability
Score
100
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.
- Strategic Partnerships
- Networks of Collective Impact Efforts
- Thought Leadership
- Raising Awareness
- Community Building
- Policy Advocacy
Metrics
Full CreditPartial CreditNo CreditMission 10/10 points
Mission 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
Note: The organization did not respond to this question.
Vision 10/10 points
Vision 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Note: The organization did not respond to this question.
Source: Nonprofit submitted responses
Goals 20/20 points
Goals 20/20 points
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: MDA’s new publishing platform, Quest Media, the redevelopment of mda.org including a Life Resources Center, and the MOVR (neuromuscular observational research) data-hub.
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Goal Two: MDA Clinical & Scientific Conference, Recreation Programs: Summer Camp & Family Getaways, Care Center Network, Resource Center, expanded Gene Therapy Support Network, Community/Medical Education.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Three: Professional development for data-informed decision making, infrastructure development w/ to bring staff capacity to a level both necessary and sufficient to achieve revenue and mission goals.
Goal Type: Invest in the capacity of our organization (financial, management, technical, etc.).
Leadership Development 15/15 points
Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
a. MDA Leadership Institute: The Leadership Institute is a year-long leadership development opportunity for 20 staff plus 1 executive leader at MDA. Content for the institute is curated from a variety of sources, including FranklinCovey’s world class All Access Pass (20 passes plus 10 additional passes purchased for executive leaders), book club, DISC, motivational articles, and videos. Students meet for 90 minutes every three weeks, with a final in-person one day session to wrap up the course.
b. Paycom Learning’s “Soft Skills for Managers and Employees and Leadership University”: This additional content package added 70+ online on-demand courses in January 2023 to all MDA staff for self-development, leadership development, and team growth.
c. Supervisor Training: Curated series of competency-based virtual classes offered once every quarter that provide 60+ MDA supervisors with the core leadership skills necessary to lead high-performing teams.
Mobilizing for Mission 15/15 points
Mobilizing for Mission 15/15 points
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
What are this organization’s external mobilizaton efforts?
Engages in strategic partnerships, advocacy, community support groups & networks, presenting & publishing research, community engagement, to raising awareness through marketing & social media.
Adaptability Story 30/30 points
Adaptability Story 30/30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
MDA's 4 pillars speak to the evolving adaptation of our work in the neuromuscular disease space as breakthroughs in treatments and care further empower people to live longer more independent lives. Caring for children and adults from day one of diagnosis and through their life’s journey; Champion – empowering families across the United States through support and programs and advocacy for access, inclusion and independence; Catalyst – Funding research breakthroughs with $1B+ invested, second only to the National Institutes of Health; and Community – Engaging our community by creating connections, fostering established relationships, and deepening MDA’s impact. Growth in the Clinical & Scientific Conference, MDA Research Grant program, including collaborative grants in Duchenne muscular dystrophy, & access to education, both community & medical, including a new Career Mentorship Program. Realizing the promise of gene therapy, MDA instituted a Gene Therapy Support Network to provide families & clinics in the Care Center Network support for the understanding and delivery of gene therapy. MDA is amplifying the mission through digital marketing, including growing social media channels and MDA’s online presence to reach more people in the community. MDA successfully led a large coalition of organizations in a joint campaign to increase access to and expand newborn screening programs. Thanks to these efforts, Congress invested an additional $3 million for lifesaving newborn screening programs at the CDC and Prevention and $2 million at the Health Resources and Services Administration. Through analysis and planning, MDA brought back in-person Summer Camps, affectionately known as “the best week of the year” for children and young adults. Our organization couldn’t do the work we are able to achieve without the tireless efforts of our volunteer family & we highlighted many during MDA’s Year of the Volunteer and #WhyIVolunteerforMDA social media campaign.