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SPASTIC PARAPLEGIA FOUNDATION INC

EIN 04-3594491 O FALLON, MO

Revenue 2025
$1,742,632
Expenses 2025
$1,418,562

Program services were 89.3% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
G48
Classification
1000
Street
6952 CLAYBORNE DR

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

1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved ones

Activities or mission (Part I)

1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved ones.

  • Withheld by Nonprofiteer: this text may name a private individual.

    Expenses $1,121,008 · Grants $1,121,008

  • The Foundation holds an annual conference each year for individuals suffering from the disease, their families, and caregivers. Researchers speak about primary lateral sclerosis and hereditary spastic paraplegia, including updates on the current state of their research. Attendees meet others affected by the disorders, typically the first time these individuals have met others with the same condition in person. Attendees pay a registration fee to attend.

    Expenses $122,042 · Revenue $32,350

  • The Foundation prints and distributes "Synapse", a periodical about the disorders, activities of the Foundation, and articles about research.

    Expenses $11,762

  • Software to facilitate advocacy of rare diseases, grant accounting, Sponsorships/Grants to organizations with complementary services to Spastic Paraplegia Foundation, Inc.

    Expenses $12,600

As filed on the 2025 return. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

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.

  • Linda Arnold

    Fundraising and Relationship Development Manager

    Total calculated
    $65,000
    From this org
    $32,500
    From related orgs
    $0
    Other
    $32,500
    Hours/week
    35

  • Lorri Steiner

    Treasurer

    Total calculated
    $61,400
    From this org
    $30,700
    From related orgs
    $0
    Other
    $30,700
    Hours/week
    6

  • Hank Chiuppi

    Secretary/Director

    Total calculated
    $0
    Hours/week
    20

  • John Cobb

    Director

    Total calculated
    $0
    Hours/week
    2

  • Tina Croghan

    Director

    Total calculated
    $0
    Hours/week
    5

  • Frank Davis

    Director

    Total calculated
    $0
    Hours/week
    2

  • Dina Landphair

    Director

    Total calculated
    $0
    Hours/week
    5

  • Greg Pruitt

    President/Director

    Total calculated
    $0
    Hours/week
    40

  • Jim Sheorn

    Vice President/Director

    Total calculated
    $0
    Hours/week
    30

  • Carina Thurgood

    Director

    Total calculated
    $0
    Hours/week
    2

  • Jackie Wellman

    Director

    Total calculated
    $0
    Hours/week
    2

  • Becki Cochran

    Director

    Total calculated
    $0
    Hours/week
    2

  • Sara Kramer

    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. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $1,742,632
    Expenses
    $1,418,562
    Contributions
    $1,590,580
    Grants paid
    $1,121,008
  • 2024
    Revenue
    $1,730,780
    Expenses
    $899,593
    Contributions
    $1,597,572
    Grants paid
    $609,828
  • 2023
    Revenue
    $1,324,845
    Expenses
    $1,928,614
    Contributions
    $1,244,568
    Grants paid
    $1,930,438
  • 2022
    Revenue
    $1,249,081
    Expenses
    $748,401
    Contributions
    $1,281,413
    Grants paid
    $575,189

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
    $1,153,340
    Expenses
    $715,727
    Assets (EOY)
    $2,650,188

  • 2020 · 990

    Revenue
    $929,060
    Expenses
    $991,817
    Assets (EOY)
    $2,291,149

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.

Grants made

  • Boston Children's Hospital

    $600,000

    2023 research collaboration - Centers of Excellence - led by Dr. Fahkari.

  • Critical Path Institute

    $500,000

    2025 Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) Taskforce to create a consortium between leading academic institutions, pharmaceutical industries, patient groups, non-governmental agencies and regulatory agencies to address unmet drug development needs for patients living with HSP and PLS.

  • Emory University

    $150,000

    2024 Modulation of Spasticity Using a Chemogenetic Approach. Led by Dr. Anthony Donsante, PhD

  • NORTHWESTERN UNIVERSITY

    $150,000

    2022 MEDICAL RESEARCH

  • Drexel University

    $150,000

    2023 medical research led by Dr. Piermarini

  • Drexel University

    $150,000

    2025 Combination Therapy for HSP-SPG4: Repurposed FDA Drug, BpV-Mediated Regeneration, and Activity-Based Rehabilitation

  • Drexel University

    $150,000

    2023 medical research led by Dr. Baas.

  • Drexel University

    $150,000

    2024 M1 monoclonal antibodies: A new tool for detection and treatment of SPG4-HSP. Led by Dr. Peter Baas.

  • Northwestern University

    $150,000

    2023 medical research led by Dr. Gautam.

  • Mayo Clinic

    $150,000

    2023 medical research let by Dr. Blitterswijk.

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 26 October 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.