Li Fraumeni Syndrome Association Inc

Nonprofit profile at a glance

EIN
452284811
IRS 990 coverage
2016–2024
Forms available
Form 990 2024, Form 990-EZ 2022
Location
Holliston, MA, USA
Phone
7742660503
Rating
72
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Patient Services - Entertainment, Recreation

Official website

Reported finances

Revenue
$277,931
Expenses
$275,728
Assets
$114,375
Liabilities
$354

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

Leadership & pay

9 people listed

Executive titles in this filing

  • Jennifer Perry (President/Co- Founder)
  • Holly Fraumeni (Vice President)

People named in this filing

  • Rob Lufkin (Med. Director)
  • Deb Soprano (Dev. Director)
  • Gina Vild (Comm.)

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

Li-Fraumeni Syndrome Association, Inc. provides a wide range of information, advocacy, and support services for individuals and families with Li Fraumeni Syndrome. We support a consortium of researchers, medical providers and caregivers to further research and promote optimal care for the LFS community.

What it reported doing in 2024

LFSA organized and financially supported the annual international LFSA Conference wherein lending researchers, providers, genetic counselors, patients and their families from all over the world shared LFSA experiences and information on the most recent LFSA cancer research, screening protocols, potential treatments, and survivorship issues. The LFSA provided patient travel scholarships for those who could otherwise not afford to attend and funded conference events and materials.

Operating model

Revenue model
Earned-program. 100% of the money available for current operations came from fees and other program revenue.
Distribution model
Direct operator. The filing allocates 100% 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 - A large share of available resources goes toward mission work and the filed numbers largely add up. A relatively small share of voting board members are independent and revenue has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 87
  • Transparency & Controls: 90
  • Accountability: 30
  • Sustainability: 40
  • Growth: 40

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 97.3%; rating input score 97
  • Program expense ratio: 98.1%; rating input score 98
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Limited
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 0%; rating input score 0; 7th percentile among comparable filings
  • Governance controls: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • 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: 0.8%; rating input score 41; 41st percentile among comparable filings
  • Total-asset coverage ratio: 0.41; rating input score 21; 21st percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 52; 52nd percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 69; 69th percentile among comparable filings

Growth

  • Program expense growth: 9.7% per year; rating input score 100; 69th percentile among comparable filings
  • Revenue growth: -4.7% per year; rating input score 0; 11th percentile among comparable filings
  • Asset growth: -1.1% per year; rating input score 0; 20th percentile among comparable filings

Details

  • Where the money goes: 97.3% of revenue deployed · 98.1% of spending went to programs
  • Governance: 0 of 10 board members independent · 5 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $270K in reported program spending
  • Leadership: top reported pay $0 · 9 people listed
  • Consistency: 16 of 16 current checks pass
  • Schedules: 2 filed schedules
  • Filing history: 5 filing years from 2016 to 2024
  • Contacts: How to reach this organization
  • Money network: Resolved incoming and outgoing counterparties from filed money flows.
  • Related organizations: Filed and resolved organization relationships.
  • 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 — Accountability: Independent voting board scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • Moderate — Sustainability: Operating margin scored 41/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • High — Sustainability: Total-asset coverage ratio scored 21/100.
  • High — Growth: Asset growth scored 0/100.
  • Review — Sustainability: Liabilities to assets ratio scored 52/100.