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Nonprofiteer
← NATIONAL MPS SOCIETY INC

Form 990 for tax year 2025

Filed by NATIONAL MPS SOCIETY INC.

Totals

Total revenue
$5,554,247
Total expenses
$2,747,970
Contributions and grants received
$4,819,156
Grants paid
$489,588
Program service revenue
$447,650
Investment income
$402,848
Other revenue
-$115,407
Total assets, end of year
$6,619,926
Total liabilities, end of year
$226,815
Net assets or fund balances, end of year
$6,393,111
Program services expenses (Part IX)
$2,115,293
Management and general expenses
$398,621
Fundraising expenses
$234,056
Program service expenses (Part III)
$2,115,293

Program services were 77.0% 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

    $1,908

  • 1b · Membership dues

    $1,675

  • 1c · Fundraising events

    $1,032,787

  • 1f · All other contributions, gifts and grants

    $3,782,786

  • 1g · Noncash contributions included above

    $72,910

  • 2a · Program service revenue: CONFERENCE INCOME

    total $447,650 · related or exempt $447,650

  • 3 · Investment income

    total $79,185 · excluded $79,185

  • 7a · Gross sales of assets other than inventory

    securities $1,037,099

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

    securities $713,436

  • 7c · Gain or loss

    securities $323,663

  • 7d · Net gain or loss

    total $323,663 · related or exempt $323,663

  • 8a · Fundraising events: gross income

    $152,886

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

    $1,032,787

  • 8b · Fundraising events: direct expenses

    $327,946

  • 8c · Net income from fundraising events

    total -$175,060

  • 11a · Other revenue: REFUND-PRIOR YEAR GRANTS PAID

    total $59,653 · related or exempt $59,653

  • 11e · Other revenue, total

    $59,653

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $285,225 · program services $285,225

  • 2 · Grants to domestic individuals

    total $154,363 · program services $154,363

  • 3 · Grants to foreign organizations and individuals

    total $50,000 · program services $50,000

  • 5 · Compensation of officers, directors and key employees

    total $428,704 · program services $282,231 · management and general $83,364 · fundraising $63,109

  • 7 · Other salaries and wages

    total $566,180 · program services $372,738 · management and general $110,098 · fundraising $83,344

  • 8 · Pension plan contributions

    total $16,349 · program services $10,763 · management and general $3,179 · fundraising $2,407

  • 9 · Other employee benefits

    total $54,100 · program services $35,616 · management and general $10,520 · fundraising $7,964

  • 10 · Payroll taxes

    total $79,434 · program services $52,294 · management and general $15,447 · fundraising $11,693

  • 11b · Fees: legal

    total $29,451 · management and general $29,451

  • 11c · Fees: accounting

    total $33,799 · management and general $33,799

  • 11d · Fees: lobbying

    total $69,439 · program services $69,439

  • 11f · Fees: investment management

    total $31,474 · management and general $31,474

  • 11g · Fees: other

    total $84,993 · program services $55,967 · management and general $15,318 · fundraising $13,708

  • 13 · Office expenses

    total $79,494 · program services $38,598 · management and general $22,417 · fundraising $18,479

  • 16 · Occupancy

    total $63,599 · program services $38,160 · management and general $25,439

  • 17 · Travel

    total $155,073 · program services $155,073

  • 19 · Conferences, conventions and meetings

    total $376,787 · program services $376,787

  • 22 · Depreciation, depletion and amortization

    total $29,679 · program services $17,808 · management and general $11,871

  • 23 · Insurance

    total $7,705 · program services $4,623 · management and general $3,082

  • 24a · Other expenses: SPONSORED EXPENSES

    total $94,942 · program services $94,942

  • 24b · Other expenses: DUES AND SUBSCRIPTIONS

    total $52,552 · program services $16,038 · management and general $3,162 · fundraising $33,352

  • 24c · Other expenses: BEREAVEMENT

    total $4,628 · program services $4,628

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $155,901 · end of year $471,176

  • 2 · Savings and temporary cash investments

    beginning of year $271,284 · end of year $1,050,385

  • 3 · Pledges and grants receivable

    beginning of year $56,450 · end of year $100,504

  • 4 · Accounts receivable

    beginning of year $7,631 · end of year $9,595

  • 9 · Prepaid expenses and deferred charges

    beginning of year $64,269 · end of year $68,336

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

    $66,628

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

    $38,099

  • 10c · Land, buildings and equipment, net

    beginning of year $30,302 · end of year $28,529

  • 11 · Investments: publicly traded securities

    beginning of year $3,149,341 · end of year $4,801,662

  • 15 · Other assets

    beginning of year $138,982 · end of year $89,739

  • 17 · Accounts payable and accrued expenses

    beginning of year $66,473 · end of year $62,502

  • 18 · Grants payable

    beginning of year $50,000 · end of year $50,000

  • 19 · Deferred revenue

    end of year $20,000

  • 25 · Other liabilities

    beginning of year $144,011 · end of year $94,313

  • 27 · Net assets without donor restrictions

    beginning of year $1,263,540 · end of year $956,987

  • 28 · Net assets with donor restrictions

    beginning of year $2,350,136 · end of year $5,436,124

Mission and programs · 2025

Mission

THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML).

  • THE SOCIETY FUNDED APPROXIMATELY 7 RESEARCH GRANTS DURING 2025 FOR THE PURPOSE OF FINDING TREATMENTS AND CURES FOR MPS AND RELATED DISEASES. THE CHIEF SCIENTIFIC OFFICER (CSO) LEADS THE SOCIETYS STRATEGIC DIRECTION IN RESEARCH, NEWBORN SCREENING, AND EMERGING SCIENCE INITIATIVES. THIS ROLE OVERSEES THE DEVELOPMENT AND FUNDING OF RESEARCH PROGRAMS TO ADDRESS UNMET MEDICAL NEEDS IN MPS AND ML DISORDERS, GUIDES ADVOCACY FOR NEWBORN SCREENING EXPANSION, AND EVALUATES INNOVATIVE SCIENTIFIC ADVANCEMENTS. THE CSO COLLABORATES WITH ACADEMIC, CLINICAL, AND INDUSTRY PARTNERS TO DRIVE PROGRESS IN TREATMENT AND DIAGNOSIS, AND ENSURES ALIGNMENT WITH THE ORGANIZATIONS MISSION TO SUPPORT FAMILIES AND ACCELERATE CURES.

    Expenses $612,165 · Grants $335,225

  • THE NATIONAL MPS SOCIETY PROVIDES COMPREHENSIVE SUPPORT TO FAMILIES AFFECTED BY MPS AND ML THROUGH ITS FAMILY SUPPORT AND PATHWAYS PROGRAMS. AT THE TIME OF DIAGNOSIS AND BEYOND, LICENSED SOCIAL WORKERS ENGAGE FAMILIES THROUGH IN-HOME VISITS AND ONGOING GUIDANCE, HELPING THEM NAVIGATE THE COMPLEX CHALLENGES OF LIVING WITH A RARE DISEASE. THE SOCIETY ALSO OFFERS CRITICAL FINANCIAL ASSISTANCE, INCLUDING FUNDING FOR MEDICAL EQUIPMENT, EDUCATIONAL AND BEREAVEMENT SCHOLARSHIPS, EXTENDED HOSPITAL STAYS, MEDICAL TRAVEL, AND CONFERENCE PARTICIPATION. THESE SERVICES ENSURE FAMILIES RECEIVE COMPASSIONATE, PRACTICAL SUPPORT. IN THE CROSSING PATHS PROGRAM EXPANDS EQUITABLE ACCESS TO EDUCATION, CLINICAL STUDIES, AND CRITICAL RESOURCES FOR FAMILIES AFFECTED BY MPS AND ML IN UNDERSERVED INNER-CITY AND RURAL COMMUNITIES. THROUGH OUTREACH, PARTNERSHIPS, AND TAILORED SUPPORT, THE PROGRAM BRIDGES GEOGRAPHIC AND SOCIOECONOMIC BARRIERS, ENSURING FAMILIES HAVE THE KNOWLEDGE AND OPPORTUNITIES TO PARTICIPATE IN CLINICAL RESEARCH AND RECEIVE SPECIALIZED CARE.

    Expenses $482,034 · Grants $154,363

  • THE SOCIETY PROVIDED INFORMATION SERVICES AND EDUCATIONAL SUPPORT FOR AFFECTED FAMILIES (NEWSLETTERS, SYNDROME BOOKLETS, FACT SHEETS, WEBSITE, DIRECTORY) AND INCREASED PUBLIC AWARENESS OF THESE RARE GENETIC DISEASES (CONFERENCES & ADVOCACY).

    Expenses $1,021,094 · Revenue $447,650

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Terri Klein

    PRESIDENT &

    Total calculated
    $161,083
    From this org
    $156,391
    From related orgs
    $0
    Other
    $4,692
    Hours/week
    55

    Schedule J breakdown matched by us

    Base
    $150,391
    Bonus
    not reported
    Other
    $6,000
    Deferred
    $4,692
    Nontaxable benefits
    not reported
    Filer's total
    $161,083

  • Scott Loiler

    CSO

    Total calculated
    $137,069
    From this org
    $133,077
    From related orgs
    $0
    Other
    $3,992
    Hours/week
    40

  • Matthew Ellinwood

    CSO

    Total calculated
    $65,946
    From this org
    $64,025
    From related orgs
    $0
    Other
    $1,921
    Hours/week
    40

  • Sharon King

    COO

    Total calculated
    $64,605
    From this org
    $62,865
    From related orgs
    $0
    Other
    $1,740
    Hours/week
    40

  • Carl Kapes

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Stephanie Cozine

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • Steve Amy Holland

    BOARD CHAIRM

    Total calculated
    $0
    Hours/week
    1

  • Maureen Cote

    VICE CHAIRMA

    Total calculated
    $0
    Hours/week
    1

  • Steven Chesser

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Colleen Kraft

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Tamara Cullere

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Lisa Berry

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Sheri Lueb

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Scott Lynn Hopkins

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Patricia Espinal

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Jason Madison

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

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 · Approval by the board or compensation committee

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
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

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

Provenance

Return type
form_990
Tax year
2025
Filed
16 July 2026
IRS schema version
2025v4.0
Source object
202612029349301001

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