The International Waldenstrom's Macroglobulinemia Foundation Inc

Nonprofit profile at a glance

EIN
541784426
IRS 990 coverage
2011–2024
Forms available
Form 990 2024
Location
Sarasota, FL, USA
Phone
9419274963
Rating
83
Verdict
STRONG
Rating confidence
Standard
Sector
Specifically Named Diseases

Reported finances

Revenue
$4,463,374
Expenses
$5,497,731
Assets
$7,467,490
Liabilities
$389,657

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

Leadership & pay

19 people listed

Executive titles in this filing

  • LOUIE NEWTON GUERIN (PRESIDENT/CEO)

Highest reported compensation

  • LOUIE NEWTON GUERIN (PRESIDENT/CEO): $161,623 total reported compensation
  • ANNETTE PRESTON (DIR. OF DEVELOPMENT): $111,145 total reported compensation

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

Overview

Mission

Mission objectives: (a) offer support and encouragement to the waldenstrom's macroglobulinemia community and others with an interest in the disease, (b) to provide information and educational programs that address patients and caregivers' concerns and (c) to provide and support research leading to better treatments and ultimately a cure.

What it reported doing in 2024

Provided 44 payments towards 28 different grants to further research in waldenstrom's macroglobulinemia: toward a rational targeted therapy, direct targeting the myd88 l265p driver mutation in wm, anti-tumor and immune microenvironment responses, crispr-based functional characterization of wm cells, origins and immunotherapy, from biology to treatment, modulation of t-cell function, novel antibody-targeted interferons, single-cell next generation, targeting the tumor microenvironment and corax in lymphoma.

Operating model

Revenue model
Donor-supported. 92% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 39% for direct work, 60% for grants, and 2% for member benefits.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 90
  • Transparency & Controls: 70
  • Accountability: 95
  • Sustainability: 32
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 87.9%; rating input score 88
  • Fundraising efficiency: $13.77 raised per $1 spent on fundraising; rating input score 48; 48th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 1 of 6 controls in place; rating input score 17
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: 2 of 8 controls in place; rating input score 25
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • 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; 72nd 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: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Fail
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -23.2%; rating input score 6; 6th percentile among comparable filings
  • Total-asset coverage ratio: 1.36; rating input score 48; 48th percentile among comparable filings
  • Liabilities to assets ratio: 0.05; rating input score 70; 70th percentile among comparable filings
  • Officer compensation ratio: 5%; rating input score 54; 54th percentile among comparable filings

Growth

  • Program expense growth: 12% per year; rating input score 100; 70th percentile among comparable filings
  • Revenue growth: 8.7% per year; rating input score 100; 63rd percentile among comparable filings
  • Asset growth: 12.8% per year; rating input score 100; 68th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 87.9% of spending went to programs
  • Governance: 15 of 15 board members independent · 7 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $4.8M in reported program spending
  • Leadership: top reported pay $162K · 19 people listed · 1 of 6 pay-setting controls reported
  • Consistency: 37 of 37 current checks pass
  • Schedules: 10 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 12 filing years from 2011 to 2024
  • Contacts: How to reach this organization
  • Money network: 9 filed money-flow records
  • Related organizations: 7 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 — Financial Efficiency: Fundraising efficiency scored 48/100.
  • High — Sustainability: Operating margin scored 6/100.
  • Review — Accountability: Governance controls: CEO compensation review process not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 48/100.
  • Review — Sustainability: Officer compensation ratio scored 54/100.