Skip to content
Nonprofiteer
← MUSCULAR DYSTROPHY ASSOCIATION

Form 990 for tax year 2022

Filed by MUSCULAR DYSTROPHY ASSOCIATION.

Totals

Total revenue
$63,227,837
Total expenses
$58,970,307
Contributions and grants received
$59,144,929
Grants paid
$13,032,682
Program service revenue
$0
Investment income
$3,244,992
Other revenue
$837,916
Total assets, end of year
$64,403,820
Total liabilities, end of year
$57,595,156
Net assets or fund balances, end of year
$6,808,664
Program services expenses (Part IX)
$38,708,019
Management and general expenses
$3,680,203
Fundraising expenses
$16,582,085
Program service expenses (Part III)
$38,708,019

Program services were 65.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1a · Federated campaigns

    $376,985

  • 1c · Fundraising events

    $24,417,479

  • 1e · Government grants (contributions)

    $2,404,491

  • 1f · All other contributions, gifts and grants

    $31,945,974

  • 1g · Noncash contributions included above

    $104,664

  • 3 · Investment income

    total $1,103,942 · excluded $1,103,942

  • 5 · Royalties

    total $541,532 · excluded $541,532

  • 6a · Gross rents

    real property $39,000

  • 6b · Less rental expenses

    real property $0

  • 6c · Rental income or loss

    real property $39,000

  • 6d · Net rental income or loss

    total $39,000 · excluded $39,000

  • 7a · Gross sales of assets other than inventory

    securities $5,340,126 · other assets $400

  • 7b · Less cost or other basis and sales expenses

    securities $3,199,476 · other assets $0

  • 7c · Gain or loss

    securities $2,140,650 · other assets $400

  • 7d · Net gain or loss

    total $2,141,050 · excluded $2,141,050

  • 8a · Fundraising events: gross income

    $1,439,097

  • 8a · Fundraising events: contributions included on line 1c

    $24,417,479

  • 8b · Fundraising events: direct expenses

    $2,081,614

  • 8c · Net income from fundraising events

    total -$642,517 · excluded -$642,517

  • 11a · Other revenue: QUEST ADVERTISING

    total $899,901 · unrelated business $899,901

  • 11e · Other revenue, total

    $899,901

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $11,829,711 · program services $11,829,711

  • 3 · Grants to foreign organizations and individuals

    total $1,202,971 · program services $1,202,971

  • 5 · Compensation of officers, directors and key employees

    total $1,168,200 · program services $735,578 · management and general $25,442 · fundraising $407,180

  • 7 · Other salaries and wages

    total $17,112,416 · program services $10,775,145 · management and general $372,678 · fundraising $5,964,593

  • 8 · Pension plan contributions

    total $366,891 · program services $231,020 · management and general $7,990 · fundraising $127,881

  • 9 · Other employee benefits

    total $4,116,595 · program services $2,592,089 · management and general $89,652 · fundraising $1,434,854

  • 10 · Payroll taxes

    total $1,255,780 · program services $790,725 · management and general $27,349 · fundraising $437,706

  • 11b · Fees: legal

    total $172,834 · program services $109,744 · management and general $10,854 · fundraising $52,236

  • 11c · Fees: accounting

    total $161,116 · management and general $161,116

  • 11d · Fees: lobbying

    total $869,855 · program services $869,855

  • 11f · Fees: investment management

    total $143,388 · management and general $143,388

  • 11g · Fees: other

    total $2,802,464 · program services $1,568,139 · management and general $73,881 · fundraising $1,160,444

  • 12 · Advertising and promotion

    total $3,108,814 · program services $1,973,988 · management and general $195,242 · fundraising $939,584

  • 13 · Office expenses

    total $3,824,069 · program services $1,574,163 · management and general $80,154 · fundraising $2,169,752

  • 14 · Information technology

    total $2,758,037 · program services $1,445,789 · management and general $381,278 · fundraising $930,970

  • 16 · Occupancy

    total $654,219 · program services $16,289 · management and general $519,108 · fundraising $118,822

  • 17 · Travel

    total $825,960 · program services $197,831 · management and general $326,490 · fundraising $301,639

  • 19 · Conferences, conventions and meetings

    total $66,575 · program services $15,946 · management and general $26,316 · fundraising $24,313

  • 20 · Interest

    total $314,063 · program services $14,901 · management and general $280,486 · fundraising $18,676

  • 22 · Depreciation, depletion and amortization

    total $1,143,350 · program services $535,102 · management and general $608,248

  • 23 · Insurance

    total $482,661 · program services $174,876 · management and general $88,605 · fundraising $219,180

  • 24a · Other expenses: EVENT EXPENSES

    total $2,803,270 · program services $963,667 · fundraising $1,839,603

  • 24b · Other expenses: PRODUCTION COSTS

    total $740,810 · program services $740,810

  • 24c · Other expenses: UBI TAX

    total $39,510 · program services $39,510

  • 24e · All other expenses

    total $1,006,748 · program services $310,170 · management and general $261,926 · fundraising $434,652

  • 26 · Joint costs (an allocation of the lines above)

    total $3,372,977 · program services $1,349,191 · management and general $0 · fundraising $2,023,786

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $7,912,128 · end of year $6,490,910

  • 2 · Savings and temporary cash investments

    beginning of year $3,720,119 · end of year $3,592,054

  • 3 · Pledges and grants receivable

    beginning of year $3,621,220 · end of year $3,820,381

  • 9 · Prepaid expenses and deferred charges

    beginning of year $2,183,933 · end of year $2,514,895

  • 10a · Land, buildings and equipment: cost or other basis

    $7,263,393

  • 10b · Land, buildings and equipment: accumulated depreciation

    $4,429,581

  • 10c · Land, buildings and equipment, net

    beginning of year $3,495,647 · end of year $2,833,812

  • 11 · Investments: publicly traded securities

    beginning of year $53,532,735 · end of year $45,050,644

  • 12 · Investments: other securities

    beginning of year $1,074,301 · end of year $76,213

  • 15 · Other assets

    beginning of year $24,911 · end of year $24,911

  • 17 · Accounts payable and accrued expenses

    beginning of year $5,293,050 · end of year $6,841,579

  • 18 · Grants payable

    beginning of year $5,380,356 · end of year $2,897,572

  • 19 · Deferred revenue

    beginning of year $2,265,058 · end of year $3,023,278

  • 23 · Secured mortgages and notes payable

    beginning of year $10,500,000 · end of year $7,969,067

  • 25 · Other liabilities

    beginning of year $47,404,780 · end of year $36,863,660

  • 27 · Net assets without donor restrictions

    beginning of year $980,444 · end of year $3,229,419

  • 28 · Net assets with donor restrictions

    beginning of year $3,741,306 · end of year $3,579,245

Mission and programs · 2022

Mission

MUSCULAR DYSTROPHY ASSOCIATION (MDA) IS THE #1 VOLUNTARY HEALTH ORGANIZATION IN THE UNITED STATES FOR PEOPLE LIVING WITH MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES. FOR OVER 70 YEARS, MDA HAS LED THE WAY IN ACCELERATING RESEARCH, ADVANCING CARE, AND ADVOCATING FOR THE SUPPORT OF OUR FAMILIES. MDA'S MISSION IS TO EMPOWER THE PEOPLE WE SERVE TO LIVE LONGER, MORE INDEPENDENT LIVES.

Activities or mission (Part I)

SEE SCHEDULE O

  • PLEASE SEE SCHEDULE O FOR FURTHER DISCUSSION OF PPP LOAN FORGIVENESS AS IT PERTAINS TO TOTAL CONTRIBUTION REVENUE.HEALTH CARE AND COMMUNITY SERVICES:MDA IS COMMITTED TO EMPOWERING PEOPLE LIVING WITH MUSCULAR DYSTROPHY, ALS AND RELATED NEUROMUSCULAR DISEASES THROUGH RESEARCH, CARE, AND ADVOCACY. AS THE LARGEST SOURCE OF FUNDING FOR NEUROMUSCULAR DISEASE RESEARCH OUTSIDE OF THE FEDERAL GOVERNMENT MDA HAS COMMITTED MORE THAN $1 BILLION TO ACCELERATE THE DISCOVERY OF THERAPIES AND CURES. WE SUPPORT THE LARGEST NETWORK OF MULTIDISCIPLINARY CLINICS AT MORE THAN 150 TOP MEDICAL INSTITUTIONS, SERVE THE COMMUNITY WITH ONE-ON-ONE SPECIALIZED SUPPORT, AND OFFER EDUCATIONAL CONFERENCES, EVENTS, AND MATERIALS FOR FAMILIES AND HEALTHCARE PROVIDERS. EACH OF OUR MDA CARE CENTERS OFFERS INDIVIDUALS AND FAMILIES BEST-IN-CLASS, COMPREHENSIVE CARE FROM AN INTEGRATED MULTIDISCIPLINARY TEAM OF HEALTHCARE SPECIALISTS CONVENIENTLY SITED AT ONE LOCATION. IN A SINGLE DAY, PATIENTS CAN SEE MULTIPLE HEALTHCARE PROVIDERS WHO WORK TOGETHER TO ENSURE COORDINATED INDIVIDUAL CARE FOR EVERY PATIENT TO BEST FIT THEIR SPECIFIC NEEDS. HIGHLY TRAINED MDA CARE SPECIALISTS SERVE AS AN IMPORTANT PART OF THE CARE TEAM, HELPING FAMILIES NAVIGATE THE HEALTH SYSTEM, ANSWERING QUESTIONS, DISTRIBUTING MDA EDUCATIONAL MATERIALS, COORDINATING MDA SERVICES, AND ASSISTING WITH COMMUNITY RESOURCE REFERRALS. EACH YEAR THOUSANDS OF CHILDREN/YOUNG ADULTS LEARN VITAL LIFE SKILLS AND GAIN INDEPENDENCE AT SUMMER CAMP AND THROUGH RECREATIONAL PROGRAMS, AT NO COST TO FAMILIES. EACH CAMP IS STAFFED WITH DEDICATED HEALTH PROFESSIONALS AND TRAINED CAMP VOLUNTEERS WHO MEET THE MEDICAL AND PHYSICAL NEEDS OF EACH CAMPER ALL AT NO COST TO FAMILIES.

    Expenses $20,061,514 · Grants $8,150,331

  • RESEARCH: MDA IS THE LARGEST NON-GOVERNMENTAL FUNDER OF NEUROMUSCULAR DISEASE RESEARCH IN THE COUNTRY, SUPPORTING STRATEGIC RESEARCH FOR MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES. SINCE ITS INCEPTION IN 1950, MDA HAS INVESTED MORE THAN $1 BILLION IN NEUROMUSCULAR DISEASE RESEARCH TO UNCOVER NEW TREATMENTS. A SINGLE BREAKTHROUGH CAN LEAD TO A CURE. OUR FUNDING RESEARCH ACROSS MANY NEUROMUSCULAR DISEASES MEANS FINDINGS FROM ONE DISEASE OFTEN ENABLE PROGRESS IN OTHERS, MAXIMIZING THE SPEED AT WHICH WE CAN MAKE PROGRESS. SUPPORT FOR MDA'S RESEARCH ENABLES MDA TO FUND LEADING RESEARCH TEAMS WORKING TOWARD BREAKTHROUGH THERAPIES, WHICH CAN HAVE A LIFE-CHANGING IMPACT ON PATIENTS. MDA-FUNDED BREAKTHROUGHS INCLUDE DRUGS FOR AMYOTROPHIC LATERAL SCLEROSIS (ALS), DUCHENNE MUSCULAR DYSTROPHY (DMD), PERIODIC PARALYSIS, POMPE DISEASE, AND SPINAL MUSCULAR ATROPHY (SMA). MDA LAUNCHED THE MOVR (NEUROMUSCULAR OBSERVATIONAL RESEARCH) DATA HUB AS A TRANSFORMATIVE PLATFORM, COMBINING MDA'S CARE CENTER NETWORK WITH A STATE-OF-THE-ART INFORMATION-MANAGEMENT SYSTEM. AS THE LARGEST CENTRALIZED DATA HUB FOR MULTIPLE NEUROMUSCULAR DISEASES, MOVR AGGREGATES CLINICAL, GENETIC, AND PATIENT-REPORTED DATA ACROSS BROAD COMMUNITIES OF HEALTHCARE PROVIDERS, RESEARCHERS, AND INDUSTRY PARTNERS THAT WILL LEAD TO RAPID DEVELOPMENTS IN PATIENT CARE, TREATMENTS, AND CURES.

    Expenses $6,422,683 · Grants $4,869,141

  • PROFESSIONAL AND PUBLIC HEALTH EDUCATION:MDA OFFERS A BROAD AND EXPANDING ARRAY OF RESOURCES AND EVENTS EXPERTLY DEVELOPED TO RESPOND TO THE RAPIDLY CHANGING TREATMENT LANDSCAPE. OUR RESOURCES FOR PROVIDING RELEVANT MEDICAL EDUCATION TO PROFESSIONALS ARE UNPARALLELED AND OUR SERVICES AND INITIATIVES REFLECT OUR LEADERSHIP IN THIS AREA. WE PROVIDE BOTH ACCREDITED CONTINUING MEDICAL EDUCATION (CME) AND NON-CME PROGRAMS. AS THE MOST COMPREHENSIVE NEUROMUSCULAR DISEASE MEETING IN THE WORLD, OUR ANNUAL MDA CLINICAL & SCIENTIFIC CONFERENCE PROVIDES A UNIQUE OPPORTUNITY TO LEARN FROM, BE INSPIRED BY, AND SHARE IDEAS WITH EXPERTS FROM ACADEMIA, GOVERNMENT, AND INDUSTRY. AT THE COMMUNITY LEVEL, WE ESTABLISHED MDA ENGAGE AND MDA ACCESS EDUCATIONAL EVENT SERIES THAT BRINGS LOCAL HIGH-IMPACT EDUCATIONAL PROGRAMS TO THE NEUROMUSCULARCOMMUNITY IN-PERSON AND VIRTUALLY. EACH OF THE ENGAGE PROGRAMS INCORPORATES MULTIPLE MODULES OF INTEREST, FROM THERAPY DEVELOPMENT ROUNDTABLES TO DISEASE MANAGEMENT TO GENETIC TESTING, DESIGNED SPECIFICALLY FOR COMMUNITY AUDIENCES. EACH EVENT ALSO INCLUDES A SOCIAL ELEMENT FOR FAMILIES AND PARTICIPANTS WITH THE AIM OF STRENGTHENING THE COMMUNITY AND HELPING ATTENDEES MAKE PERSONAL CONNECTIONS.

    Expenses $12,223,822 · Grants $13,210

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Anjan Aralihalli

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Ankur Ghia

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Benjamin Cumbo III

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Charles D Schoor Esq

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Chris Rosa

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Dan Fries

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Elizabeth McNally MD PhD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Eugene Williams

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Governor Brad Henry

    CHAIRMAN

    Total calculated
    $0
    Hours/week
    5

  • Hon Robert E Pipia

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Jennifer Gottlieb

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • John Costantino

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • John E Howell

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Lilian Wu PhD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Louis Kunkel PhD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Mark Smith

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Matt Plummer

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Nancy Kindelan

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Steve Farella

    OUTGOING CHAIRMAN

    Total calculated
    $0
    Hours/week
    5

  • Victor Wright

    DIRECTOR (DECD. DEC 2022)

    Total calculated
    $0
    Hours/week
    1

  • Donald Wood

    PRESIDENT & CEO

    Total calculated
    $549,560
    From this org
    $522,923
    From related orgs
    $0
    Other
    $26,637
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $494,959
    Bonus
    $27,964
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $26,637
    Filer's total
    $549,560

  • Henry Lanman

    SEC. & CHIEF LEGAL OFFICER

    Total calculated
    $225,284
    From this org
    $188,632
    From related orgs
    $0
    Other
    $36,652
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $188,632
    Bonus
    $0
    Other
    $0
    Deferred
    $12,923
    Nontaxable benefits
    $23,729
    Filer's total
    $225,284

  • Michael Kennedy

    TREASURER & CFO

    Total calculated
    $393,356
    From this org
    $331,534
    From related orgs
    $0
    Other
    $61,822
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $289,534
    Bonus
    $42,000
    Other
    $0
    Deferred
    $27,000
    Nontaxable benefits
    $34,822
    Filer's total
    $393,356

  • Brian Beirne

    VP OF MULTI-CHANNEL MARKET

    Total calculated
    $221,166
    From this org
    $214,346
    From related orgs
    $0
    Other
    $6,820
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $204,346
    Bonus
    $10,000
    Other
    $0
    Deferred
    $5,182
    Nontaxable benefits
    $1,638
    Filer's total
    $221,166

  • Kristine Welker

    CHIEF OF STAFF

    Total calculated
    $375,766
    From this org
    $304,472
    From related orgs
    $0
    Other
    $71,294
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $292,472
    Bonus
    $12,000
    Other
    $0
    Deferred
    $27,000
    Nontaxable benefits
    $44,294
    Filer's total
    $375,766

  • Angela Lek

    VP, RESEARCH

    Total calculated
    $197,290
    From this org
    $186,779
    From related orgs
    $0
    Other
    $10,511
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $186,779
    Bonus
    $0
    Other
    $0
    Deferred
    $9,917
    Nontaxable benefits
    $594
    Filer's total
    $197,290

  • Sharon Hesterlee

    CHIEF RESEARCH OFFICER

    Total calculated
    $289,234
    From this org
    $229,015
    From related orgs
    $0
    Other
    $60,219
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $229,015
    Bonus
    $0
    Other
    $0
    Deferred
    $27,000
    Nontaxable benefits
    $33,219
    Filer's total
    $289,234

  • Monica Pappas

    VP, TECHNOLOGY

    Total calculated
    $216,152
    From this org
    $188,558
    From related orgs
    $0
    Other
    $27,594
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $188,558
    Bonus
    $0
    Other
    $0
    Deferred
    $27,000
    Nontaxable benefits
    $594
    Filer's total
    $216,152

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Compensation committee
  • 3 · Independent compensation consultant
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 7 · Other non-fixed payments

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 7
INCLUDED ON SCHEDULE J, PART II, COLUMN B(II) REPRESENTS EMPLOYEE BONUSES BASED ON INDIVIDUAL AND ORGANIZATIONAL PERFORMANCE METRICS. THESE PAYMENTS ARE SUBJECT TO FINAL BOARD APPROVAL.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type
form_990
Tax year
2022
Filed
24 May 2023
IRS schema version
2022v5.0
Source object
202341459349300649

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.