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NATIONAL MPS SOCIETY INC

EIN 11-2734849 DURHAM, NC

Revenue 2025
$5,554,247
Expenses 2025
$2,747,970

Program services were 77.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
Classification
1000
Street
1007 SLATER RD STE 220

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

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.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • 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. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $5,554,247
    Expenses
    $2,747,970
    Contributions
    $4,819,156
    Grants paid
    $489,588
  • 2024
    Revenue
    $2,108,438
    Expenses
    $2,506,869
    Contributions
    $1,525,957
    Grants paid
    $638,917
  • 2023
    Revenue
    $2,296,659
    Expenses
    $2,758,261
    Contributions
    $1,771,031
    Grants paid
    $565,222
  • 2022
    Revenue
    $1,837,186
    Expenses
    $2,686,456
    Contributions
    $1,450,281
    Grants paid
    $1,012,145

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $1,902,823
    Expenses
    $2,087,379
    Assets (EOY)
    $5,360,039

  • 2020 · 990

    Revenue
    $2,011,223
    Expenses
    $1,741,828
    Assets (EOY)
    $5,467,051

  • 2019 · 990

    Revenue
    $2,740,255
    Expenses
    $1,977,648
    Assets (EOY)
    $5,077,461

  • 2018 · 990

    Revenue
    $1,816,690
    Expenses
    $2,160,441
    Assets (EOY)
    $3,754,331

  • 2017 · 990

    Revenue
    $2,822,805
    Expenses
    $2,012,286
    Assets (EOY)
    $4,270,657

  • 2016 · 990

    Revenue
    $1,750,121
    Expenses
    $1,544,884
    Assets (EOY)
    $3,331,496

  • 2015 · 990

    Revenue
    $1,450,216
    Expenses
    $1,305,180
    Assets (EOY)
    $2,935,802

  • 2014 · 990

    Revenue
    $1,478,795
    Expenses
    $1,230,076
    Assets (EOY)
    $2,931,972

  • 2013 · 990

    Revenue
    $1,106,177
    Expenses
    $1,173,938
    Assets (EOY)
    $2,504,810

  • 2012 · 990

    Revenue
    not reported
    Expenses
    $1,240,206
    Assets (EOY)
    $2,599,316

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

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

Where these grants went next →

Grants received

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

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 29 October 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.