Charity Review

  • Issued: June 2013
  • Expires: August 2015

Muscular Dystrophy Association

Accredited Charity

Meets Standards


222 South Riverside Plaza, Suite 1500
Chicago, IL 60606
Accredited Charity


222 South Riverside Plaza, Suite 1500
Chicago, IL 60606
Accredited Charity

Accredited Charity

Meets Standards

Standards For Charity Accountability


  1. Board Oversight

    Oversight of Operations and Staff: Standard 1

    Organizations shall have a board of directors that provides adequate oversight of the charity's operations and its staff. Indication of adequate oversight includes, but is not limited to, regularly scheduled appraisals of the CEO's performance, evidence of disbursement controls such as board approval of the budget, fund raising practices, establishment of a conflict of interest policy, and establishment of accounting procedures sufficient to safeguard charity finances.

    The organization meets this standard.

  2. Board Size

    Number of Board Members: Standard 2

    Soliciting organizations shall have a board of directors with a minimum of five voting members.

    The organization meets this standard.

  3. Board Meetings

    Frequency and Attendance of Board Meetings: Standard 3

    An organization shall have a minimum of three evenly spaced meetings per year of the full governing body with a majority in attendance, with face-to-face participation. A conference call of the full board can substitute for one of the three meetings of the governing body. For all meetings, alternative modes of participation are acceptable for those with physical disabilities.

    The organization meets this standard.

  4. Board Compensation

    Compensated Board Members: Standard 4

    Not more than one or 10% (whichever is greater) directly or indirectly compensated person(s) serving as voting member(s) of the board. Compensated members shall not serve as the board's chair or treasurer.

    The organization meets this standard.

  5. Conflict of Interest

    Conflict of Interest: Standard 5

    No transaction(s) in which any board or staff members have material conflicting interests with the charity resulting from any relationship or business affiliation. Factors that will be considered when concluding whether or not a related party transaction constitutes a conflict of interest and if such a conflict is material, include, but are not limited to: any arm's length procedures established by the charity; the size of the transaction relative to like expenses of the charity; whether the interested party participated in the board vote on the transaction; if competitive bids were sought and whether the transaction is one-time, recurring or ongoing.

    The organization meets this standard.

Measuring Effectiveness

  1. Effectiveness Policy

    Board Policy on Effectiveness: Standard 6

    Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

    The organization meets this standard.

  2. Effectiveness Report

    Board Approval of Written Report on Effectiveness: Standard 7

    Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.

    The organization meets this standard.


  1. Program Expenses

    Program Service Expense Ratio: Standard 8

    Spend at least 65% of its total expenses on program activities.

    The organization meets this standard.

  2. Fund Raising Expenses

    Fund Raising Expense Ratio: Standard 9

    Spending should be no more than 35% of related contributions on fund raising. Related contributions include donations, legacies, and other gifts received as a result of fund raising efforts.

    The organization meets this standard.

  3. Accumulating Funds

    Ending Net Assets: Standard 10

    Avoid accumulating funds that could be used for current program activities. To meet this standard, the charity's unrestricted net assets available for use should not be more than three times the size of the past year's expenses or three times the size of the current year's budget, whichever is higher.

    The organization meets this standard.

  4. Audit Report

    Financial Statements: Standard 11

    Make available to all, on request, complete annual financial statements prepared in accordance with generally accepted accounting principles. When total annual gross income exceeds $500,000, these statements should be audited in accordance with generally accepted auditing standards. For charities whose annual gross income is less than $500,000, a review by a certified public accountant is sufficient to meet this standard. For charities whose annual gross income is less than $250,000, an internally produced, complete financial statement is sufficient to meet this standard.

    The organization meets this standard.

  5. Detailed Expense Breakdown

    Detailed Functional Breakdown of Expenses: Standard 12

    Include in the financial statements a breakdown of expenses (e.g., salaries, travel, postage, etc.) that shows what portion of these expenses was allocated to program, fund raising, and administrative activities. If the charity has more than one major program category, the schedule should provide a breakdown for each category.

    The organization meets this standard.

  6. Accurate Expense Reporting

    Accuracy of Expenses in Financial Statements: Standard 13

    Accurately report the charity's expenses, including any joint cost allocations, in its financial statements. For example, audited or unaudited statements which inaccurately claim zero fund raising expenses or otherwise understate the amount a charity spends on fund raising, and/or overstate the amount it spends on programs will not meet this standard.

    The organization meets this standard.

  7. Budget Plan

    Budget: Standard 14

    Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.

    The organization meets this standard.

Fund Raising & Info

  1. Truthful Materials

    Misleading Appeals: Standard 15

    Have solicitations and informational materials, distributed by any means, that are accurate, truthful and not misleading, both in whole and in part. Appeals that omit a clear description of program(s) for which contributions are sought will not meet this standard. A charity should also be able to substantiate that the timing and nature of its expenditures are in accordance with what is stated, expressed, or implied in the charity's solicitations.

    The organization meets this standard.

  2. Annual Report

    Annual Report: Standard 16

    Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.

    The organization meets this standard.

  3. Website Disclosures

    Web Site Disclosures: Standard 17

    Include on any charity websites that solicit contributions, the same information that is recommended for annual reports, as well as the mailing address of the charity and electronic access to its most recent IRS Form 990.

    The organization meets this standard.

  4. Donor Privacy

    Privacy for Written Appeals & Internet Privacy: Standard 18

    Address privacy concerns of donors by (a) providing in written appeals, at least annually, a means (e.g., such as a check off box) for both new and continuing donors to inform the charity if they do not want their name and address shared outside the organization, (b) providing a clear, prominent and easily accessible privacy policy on any of its websites that tells visitors (i) what information, if any, is being collected about them by the charity and how this information will be used, (ii) how to contact the charity to review personal information collected and request corrections, (iii) how to inform the charity (e.g., a check off box) that the visitor does not wish his/her personal information to be shared outside the organization, and (iv) what security measures the charity has in place to protect personal information.

    The organization meets this standard.

  5. Cause Marketing Disclosures

    Cause Related Marketing: Standard 19

    Clearly disclose how the charity benefits from the sale of products or services (i.e., cause-related marketing) that state or imply that a charity will benefit from a consumer sale or transaction. Such promotions should disclose, at the point of solicitation: (a) the actual or anticipated portion of the purchase price that will benefit the charity (e.g., 5 cents will be contributed to abc charity for every xyz company product sold), (b) the duration of the campaign (e.g., the month of October), (c) any maximum or guaranteed minimum contribution amount (e.g., up to a maximum of $200,000).

    The organization meets this standard.

  6. Complaints

    Complaints: Standard 20

    Respond promptly to and act on complaints brought to its attention by the BBB Wise Giving Alliance and/or local Better Business Bureaus about fund raising practices, privacy policy violations and/or other issues.

    The organization meets this standard.


Muscular Dystrophy Association meets the 20 Standards for Charity Accountability.


  • Year, State Incorporated

    1950, New York

  • Stated Purpose

    "to cure muscular dystrophy, ALS and related diseases by funding worldwide research, and to provide comprehensive health care and support services, advocacy and education."


MDA provides services for individuals affected by neuromuscular diseases and oversees a network of 200 hospital-affiliated clinics, including more than 40 specialized MDA/ALS centers, across the United States. The organization reports that at its clinics, MDA offers both diagnostic and follow-up care for tens of thousands of individuals annually. In addition, MDA reports providing support through 180 support groups, 77 summer camps for more than 3500 children (age 6-17) with neuromuscular diseases, assistance to repairs to medical equipment, an equipment loan program, evaluations for physical, occupational or respiratory therapy and annual flu shots. For calendar year 2011, MDA reported that it provided funding of $33.9 million for 378 scientific investigations in the U.S. and abroad. MDA partners with federal government health researchers and biotechnology and pharmaceutical companies to develop and test potential treatments for neuromuscular diseases. Through its advocacy program, MDA works to effectively project the voices of and protect the interests of the individuals and families they serve in matters of public policy and research advancement. MDA offers educational speakers, seminars, videos, brochures, books, newsletters, national magazines and websites, with many publications available in Spanish. The annual MDA Labor Day Weekend Show provides public information on neuromuscular diseases and raises funds for MDA services and research programs. Some ($3,029,000 or 13%) of MDA's professional and public health education program expenses are carried out in conjunction with fund raising appeals.

For the year ended December 31, 2011, MDA's program expenses were:

Patient and community services 74,563,817
Research 38,126,006
Professional and public health education 22,909,284
Total Program Expenses: $135,599,107

Governance & Staff

  • Chief Executive

    Steven M. Derks, President & CEO

  • Compensation*


  • Chair of the Board

    M.D. R. Rodney Howell, M.D.

  • Chair's Profession / Business Affiliation

    Professor of Pediatrics and Chairman Emeritus, University of Miami

  • Board Size


  • Paid Staff Size


*2012 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Fund Raising

Method(s) Used:

MDA incurred joint costs of $7,085,000 for informational materials and activities that included fund raising materials. Of those costs $3,542,000 was allocated to fund raising expenses, $3,029,000 was allocated to program expenses, and $514,000 was allocated to administrative expenses.
Fund raising costs were 16% of related contributions. (Related contributions, which totaled $157,659,807, are donations received as a result of fund raising activities.)

Tax Status

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.


The following information is based on MDA's audited financial statements for the year ended December 31, 2011.

Source of Funds
Special events 127,662,806
Contributions 23,008,696
Bequests and legacies 6,209,417
Received indirectly 778,888
Investment loss -551,153
Total Income $157,108,654
  • Programs: 77%
  • Fundraising: 14%
  • Administrative: 9%
Total Income $157,108,654
Program expenses 135,599,107
Fundraising expenses $24,632,642
Administrative expenses $15,362,456
Total expenses: $175,594,205
Expenses in Excess of Income (-18,485,551)
Beginning Net Assets 67,271,643
Other Changes In Net Assets -35,428,896
Ending Net Assets 13,357,196
Total Liabilities 84,950,677
Total Assets 98,307,873

Note 1: As noted in the income summary above, MDA reported in its audited financial statements for year ended December 31, 2011 that it received $644,273 in donated durable medical equipment. Note 2: Other changes in net assets of ($35,428,896) refers to unrecognized benefit costs.

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the Council of Better Business Bureaus, Inc.

This report is not to be used for fund raising or promotional purposes.