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INTERNATIONAL SOCIETY FOR FRONTOTEMPORAL DEMENTIAS INC

EIN 61-1581848 BURNSVILLE, MN

Browse the largest nonprofits in Minnesota

Revenue 2023
$134,293
Expenses 2023
$25,987

Program services were 78.1% of total expenses calculated — Part III's total program service expenses over total expenses, both as filed.

As filed

Subsection
03
NTEE code
G96
Classification
1000
Street
14305 SOUTHCROSS DR W STE 100

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).

Other organizations at this address

14 other organizations in the IRS Business Master File list the same street address. matched by us

This address is a suite or unit (STE 100). Organizations that share one are often clients of the same office-services firm, accountant or registered agent rather than related to each other.

We match the street line and ZIP code as the IRS gives them, ignoring case and outer spaces and nothing else, so "AVE" and "AVENUE" count as different streets and this list can miss some. A shared address can mean related organizations or a shared office, but it can also be a registered agent, a mail drop or a service provider holding mail for unrelated clients. It is not, by itself, evidence that two organizations are connected.

Mission and programs · 2023

Primary exempt purpose

To lead global efforts in understanding and treating frontotemporal dementias by advancing breakthrough research, fostering interdisciplinary collaboration, supporting emerging scientists, and promoting excellence in educational initiatives.

  • The Organization plans and executes a biennial conference and workshop next fiscal year to advance the mission of the organization.

    Expenses $20,299

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2023

As listed in Part VII of the 2023 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • John van Swieten

    President

    Total calculated
    $0
    Hours/week
    2

  • Olivier Piguet

    President-Elect

    Total calculated
    $0
    Hours/week
    1

  • Chiadi Onyike

    Chair Finance/Membership Committee

    Total calculated
    $0
    Hours/week
    1

  • Howie Rosen

    Elect Finance/Membership Committe

    Total calculated
    $0
    Hours/week
    1

  • Ian MacKenzie

    Chair Prog/Site/Selection Committee

    Total calculated
    $0
    Hours/week
    1

  • Manuela Neumann

    Elect Prog/Site/Selection Committee

    Total calculated
    $0
    Hours/week
    1

  • Carmela Tartaglia

    Chair Publication/Commun Committee

    Total calculated
    $0
    Hours/week
    1

  • Kyrana Tsapkini

    Elect Publication/Commun Committee

    Total calculated
    $0
    Hours/week
    1

  • Bernardino Ghetti

    Treasurer/Secretary

    Total calculated
    $0
    Hours/week
    2

  • David Casalod

    Executive Director

    Total calculated
    $0
    Hours/week
    2

  • Tessa Benitez

    Associate Executive Director

    Total calculated
    $0
    Hours/week
    2

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

  • 2023
    Revenue
    $134,293
    Expenses
    $25,987
    Contributions
    $93,491
    Grants paid
    not reported
  • 2022
    Revenue
    $28,638
    Expenses
    $38,652
    Contributions
    $698
    Grants paid
    not reported

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-EZ

    Revenue
    $38,006
    Expenses
    $20,980
    Assets (EOY)
    $75,327

  • 2020 · 990-EZ

    Revenue
    $47,567
    Expenses
    $21,754
    Assets (EOY)
    $58,300

  • 2019 · 990-EZ

    Revenue
    $15,455
    Expenses
    $14,217
    Assets (EOY)
    $32,487

  • 2018 · 990-EZ

    Revenue
    $17,411
    Expenses
    $30,085
    Assets (EOY)
    $31,249

  • 2017 · 990-EZ

    Revenue
    $21,140
    Expenses
    $16,527
    Assets (EOY)
    $43,937

  • 2016 · 990-EZ

    Revenue
    $21,405
    Expenses
    $23,530
    Assets (EOY)
    $39,324

  • 2015 · 990-EZ

    Revenue
    $24,442
    Expenses
    $16,579
    Assets (EOY)
    $41,449

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

No itemized grants to organizations. Schedule I is filed only by organizations that granted more than $5,000 to a recipient, so most filers have none.

Grants received

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 9 November 2026 and read 9 November 2026, for every organization at once. Returns through tax year 2023, the newest we have parsed for this organization.