Lymphangiomatosis & Gorhams Disease Alliance Inc

Nonprofit profile at a glance

EIN
261224181
IRS 990-EZ coverage
2012–2024
Forms available
Form 990 2023, Form 990-EZ 2024
Location
Saint Petersburg, FL, USA
Phone
2622278453
Rating
84
Verdict
STRONG
Rating confidence
Moderate
Sector
Voluntary Health Associations & Medical Disciplines N.E.C.

Official website

Reported finances

Revenue
$118,890
Expenses
$153,100
Assets
$353,825
Liabilities
$9,279

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

Leadership & pay

10 people listed

Executive titles in this filing

  • MICHAEL KELLY (EXECUTIVE DIRECTOR)
  • SCOTT WEISNER (PRESIDENT)

People named in this filing

  • LOUISE MURGIA (DIRECTOR OF OPERATIONS)
  • MICHAEL KELLY (EXECUTIVE DIRECTOR)
  • SCOTT WEISNER (PRESIDENT)

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

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

Overview

Mission

Worldwide patient support program which includes a patient registry, a website with rare disease information and patient discussion forum.

What it reported doing in 2024

Research - in this area, we host a cla webinar series for research. Presentations are posted online for the general public. Raised funds for research grants specific to clas. Also, lay summaries are created to educate the public about new research papers and discoveries. This area also covers work with our medical and scientific advisory council.

Operating model

Revenue model
Donor-supported. 96% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 77% for direct work, and 23% for grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and reported officer compensation is a large share of total spending, which may reflect staffing concentration.

Rating breakdown

  • Financial Efficiency: 87
  • Transparency & Controls: 85
  • Sustainability: 32
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 94.8%; rating input score 95
  • Program expense ratio: 73.4%; rating input score 73

Transparency & Controls

  • Consistency checks: 81.8%; rating input score 82; 0th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100

Sustainability

  • Operating margin: -28.8%; rating input score 5; 5th percentile among comparable filings
  • Total-asset coverage ratio: 2.31; rating input score 84; 84th percentile among comparable filings
  • Liabilities to assets ratio: 0.03; rating input score 35; 35th percentile among comparable filings
  • Officer compensation ratio: 44.2%; rating input score 6; 6th percentile among comparable filings

Growth

  • Program expense growth: 12.4% per year; rating input score 100; 66th percentile among comparable filings
  • Revenue growth: 5.8% per year; rating input score 100; 51st percentile among comparable filings
  • Asset growth: 5.8% per year; rating input score 100; 48th percentile among comparable filings

Details

  • Where the money goes: 94.8% of revenue deployed · 73.4% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 3 filed program accomplishments · $112K in reported program spending
  • Leadership: top reported pay $0 · 10 people listed
  • Consistency: 9 of 9 current checks pass
  • Schedules: 3 filed schedules
  • Filing history: 5 filing years from 2012 to 2024
  • Contacts: How to reach this organization
  • Money network: 7 filed money-flow records
  • Related organizations: 3 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.

Key Signals

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

  • High — Sustainability: Operating margin scored 5/100.
  • High — Sustainability: Officer compensation ratio scored 6/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 35/100.