American Porphyria Foundation

Nonprofit profile at a glance

EIN
364401266
IRS 990 coverage
2010–2024
Forms available
Form 990 2024
Location
Sarasota, FL, USA
Phone
3013477166
Rating
63
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Educational Services and Schools - Other

Official website

Reported finances

Revenue
$335,190
Expenses
$354,446
Assets
$282,993
Liabilities
$0

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

Leadership & pay

7 people listed

Executive titles in this filing

  • NICOLE CASTELLANO (EXECUTIVE DIRECTOR)
  • PAUL STICKLER (PRESIDENT)

Highest reported compensation

  • NICOLE CASTELLANO (EXECUTIVE DIRECTOR): $59,231 total reported compensation
  • DESIREE LYON HOWE (TRUSTEE): $47,692 total reported compensation

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

Overview

Mission

Porphyria education and research.

What it reported doing in 2024

Porphyria education and research - dissemination of information to thousands of individuals affected by porphyria and grants to physicians for research

Operating model

Revenue model
Donor-supported. 95% of the money available for current operations came from contributions and gifts.
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 - The filed numbers largely add up and a large share of available resources goes toward mission work. Some filing-based governance responses are negative or unanswered and a relatively small share of voting board members are independent.

Rating breakdown

  • Financial Efficiency: 60
  • Transparency & Controls: 92
  • Accountability: 44
  • Sustainability: 34
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 65.9%; rating input score 66
  • Program expense ratio: 60.7%; rating input score 61
  • Fundraising efficiency: $5.63 raised per $1 spent on fundraising; rating input score 25; 25th percentile among comparable filings

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: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 57.1%; rating input score 57; 17th percentile among comparable filings
  • Governance controls: 2 of 8 controls in place; rating input score 25
    • Conflict-of-interest policy: Fail
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Missing
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Fail
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -5.7%; rating input score 28; 28th percentile among comparable filings
  • Total-asset coverage ratio: 0.8; rating input score 35; 35th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 80; 80th percentile among comparable filings
  • Officer compensation ratio: 30.2%; rating input score 11; 11th percentile among comparable filings

Growth

  • Program expense growth: -6.4% per year; rating input score 0; 15th percentile among comparable filings
  • Revenue growth: -2.1% per year; rating input score 0; 16th percentile among comparable filings
  • Asset growth: 2.6% per year; rating input score 100; 36th percentile among comparable filings

Details

  • Where the money goes: 65.9% of revenue deployed · 60.7% of spending went to programs
  • Governance: 4 of 7 board members independent · 2 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $215K in reported program spending
  • Leadership: top reported pay $59K · 7 people listed
  • Consistency: 28 of 28 current checks pass
  • Schedules: 4 filed schedules · includes major donors
  • Filing history: 14 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • 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: Governance controls: 5 of 7 not reported.
  • Review — Accountability: Independent voting board scored 57/100.
  • High — Financial Efficiency: Fundraising efficiency scored 25/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • High — Sustainability: Operating margin scored 28/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 35/100.
  • High — Sustainability: Officer compensation ratio scored 11/100.