Project Alive

Nonprofit profile at a glance

EIN
464617970
IRS 990 coverage
2016–2025
Forms available
Form 990 2025, Form 990-EZ 2015, Form 990-T 2025, Form 990-N 2014
Location
Davenport, FL, USA
Phone
8652489092
Rating
82
Verdict
STRONG
Rating confidence
Moderate
Sector
Public Foundations

Official website

Reported finances

Revenue
$468,046
Expenses
$849,174
Assets
$1,882,123
Liabilities
$183,056

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

16 people listed

Executive titles in this filing

  • KRISTIN MCKAY (PRESIDENT)

Highest reported compensation

  • KRISTIN MCKAY (PRESIDENT): $86,240 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Project alive exists to find a cure for hunter syndrome through research and advocacy, and provide education and resources to the hunter syndrome community.

What it reported doing in 2025

"n person - the yearly family fair brings mps ii families, the medicalcommunity, educators, and industry together to attend sessions onsubjects important to the community. Families have the opportunity to talk with industry partners, other support organizations, and meet other families who are affected by mps ii. Hosted a market insights roundtable to discuss with insurance payors the need for them to be proactive in how they will handle coverage of newly fda approved treatments for mps ii patients.

Operating model

Revenue model
Donor-supported. 86% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 91% 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.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 83
  • Transparency & Controls: 94
  • Accountability: 74
  • Sustainability: 25
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 76.9%; rating input score 77
  • Fundraising efficiency: $4.59 raised per $1 spent on fundraising; rating input score 19; 19th 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: 100%; rating input score 100; 81st 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; 64th percentile among comparable filings
  • Governance controls: 3 of 8 controls in place; rating input score 38
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Fail
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Fail
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -81.4%; rating input score 2; 2nd percentile among comparable filings
  • Total-asset coverage ratio: 2.22; rating input score 62; 62nd percentile among comparable filings
  • Liabilities to assets ratio: 0.1; rating input score 22; 22nd percentile among comparable filings
  • Officer compensation ratio: 10.2%; rating input score 27; 27th percentile among comparable filings

Growth

  • Program expense growth: 3.4% per year; rating input score 100; 44th percentile among comparable filings
  • Revenue growth: 1.3% per year; rating input score 100; 26th percentile among comparable filings
  • Asset growth: 17.1% per year; rating input score 100; 79th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 76.9% of spending went to programs
  • Governance: 14 of 14 board members independent · 3 of 8 filing controls reported
  • Programs: 5 filed program accomplishments · $653K in reported program spending
  • Leadership: top reported pay $86K · 16 people listed
  • Consistency: 34 of 34 current checks pass
  • Schedules: 6 filed schedules · includes major donors and grants
  • Filing history: 8 filing years from 2016 to 2025
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Related organizations: 2 filed related-organization links
  • 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.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

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

  • Moderate — Accountability: Governance controls: 5 of 8 not reported.
  • High — Financial Efficiency: Fundraising efficiency scored 19/100.
  • High — Sustainability: Operating margin scored 2/100.
  • High — Sustainability: Liabilities to assets ratio scored 22/100.
  • High — Sustainability: Officer compensation ratio scored 27/100.