International Society for Frontotemporal Dementias Inc

Nonprofit profile at a glance

EIN
611581848
IRS 990 coverage
2024–2024
Forms available
Form 990 2024, Form 990-EZ 2023
Location
Burnsville, MN, USA
Phone
9526831878
Rating
62
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Neurology, Neuroscience

Official website

Reported finances

Revenue
$504,220
Expenses
$160,613
Assets
$483,425
Liabilities
$38,062

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

10 people listed

Executive titles in this filing

  • Olivier Piguet (President / Treasurer / Secretary)
  • Jonathan Rohrer (President-Elect)
  • David Casalod (Executive Director)
  • Tessa Benitez (Associate Executive Director)

People named in this filing

  • Olivier Piguet (President / Treasurer / Secretary)
  • Jonathan Rohrer (President-Elect)
  • Howie Rosen (Chair Finance)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2024

ISFTD organized and hosted the 2024 International ALS-FTD Workshop in Amsterdam, convening 150 FTD professionals to advance understanding and collaboration in the FTD and ALS fields. ISFTD also launched a new strategic planning initiative, expanded educational offerings through webinars, and began developing support programs for early- and mid-career researchers.

Operating model

Revenue model
Donor-supported. 98% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 81% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 42
  • Transparency & Controls: 73
  • Accountability: 82
  • Sustainability: 82
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 26.5%; rating input score 26
  • Program expense ratio: 82.7%; rating input score 83
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 90.9%; rating input score 91; 8th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Limited
    • Conducts field audits: Limited
    • May suspend future funding: Limited
    • Requires financial reports: Limited
    • Conducts site visits: Limited
    • Requires grant agreements: Limited
    • May require repayment: Limited
  • Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 4 of 7 controls in place; rating input score 57
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 68.1%; rating input score 96; 96th percentile among comparable filings
  • Total-asset coverage ratio: 3.01; rating input score 75; 75th percentile among comparable filings
  • Liabilities to assets ratio: 0.08; rating input score 46; 46th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 81; 81st percentile among comparable filings

Growth

  • Program expense growth: Limited
  • Revenue growth: 37.3% per year; rating input score 100; 94th percentile among comparable filings
  • Asset growth: 30.6% per year; rating input score 100; 91st percentile among comparable filings

Details

  • Where the money goes: 26.5% of revenue deployed · 82.7% of spending went to programs
  • Governance: 8 of 8 board members independent · 4 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $133K in reported program spending
  • Leadership: top reported pay $0 · 10 people listed
  • Consistency: 26 of 27 current checks pass · 1 finding to review
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
  • Contacts: How to reach this organization
  • Money network: Resolved incoming and outgoing counterparties from filed money flows.
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Mission deployment rate scored 26/100.
  • Review — Accountability: Governance controls: 2 of 6 not reported.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Moderate — Sustainability: Liabilities to assets ratio scored 46/100.