Immune Deficiency Foundation

Nonprofit profile at a glance

EIN
521214782
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Hanover, MD, USA
Phone
4103216647
Rating
77
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$11,404,598
Expenses
$8,377,069
Assets
$23,311,148
Liabilities
$1,453,460

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

Leadership & pay

21 people listed

Executive titles in this filing

  • JOREY BERRY (PRESIDENT &)

Highest reported compensation

  • JOREY BERRY (PRESIDENT &): $392,480 total reported compensation
  • AIMEE SIMPSON (CHIEF DEV. O): $184,423 total reported compensation
  • SARAH ROSE (CFO): $181,357 total reported compensation

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

Overview

Mission

The immune deficiency foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency. We foster a community that is connected, engaged, and empowered through advocacy, education, and research.

What it reported doing in 2025

The pi community relies on individual assistance including but not limited to answering insurance questions, locating a specialist in their area, finding treatment information, and learning more about their diagnosis. Our patient advocacy specialists provided answers to over 2,200 questions from individuals seeking education, information, and assistance. The organization also works at the federal and state levels to educate lawmakers and the public about issues such as vaccine access and insurance coverage challenges, that impact those who are immunocompromised. A strong volunteer grassroots advocacy network, including health access advocate volunteers, inform policymakers about issues affecting those with pi. In 2025, there were more than 3,650 letters and messages sent to legislators and executive officials to ensure that people with pi can live healthy and productive lives with excellent treatment options and access to the most appropriate healthcare available.

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 90% 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

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 58
  • Transparency & Controls: 84
  • Accountability: 100
  • Sustainability: 67
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 54.5%; rating input score 55
  • Program expense ratio: 70.1%; rating input score 70
  • Fundraising efficiency: $11.06 raised per $1 spent on fundraising; rating input score 36; 36th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.8%; rating input score 94; 19th percentile among comparable filings
  • Pay-setting controls: 4 of 6 controls in place; rating input score 67
    • Compensation committee: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 97.2%; rating input score 97; 37th 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: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 26.5%; rating input score 82; 82nd percentile among comparable filings
  • Total-asset coverage ratio: 2.78; rating input score 64; 64th percentile among comparable filings
  • Liabilities to assets ratio: 0.06; rating input score 74; 74th percentile among comparable filings
  • Officer compensation ratio: 17.3%; rating input score 9; 9th percentile among comparable filings

Growth

  • Program expense growth: 0.3% per year; rating input score 100; 11th percentile among comparable filings
  • Revenue growth: 4.3% per year; rating input score 100; 35th percentile among comparable filings
  • Asset growth: 8.5% per year; rating input score 100; 60th percentile among comparable filings

Details

  • Where the money goes: 54.5% of revenue deployed · 70.1% of spending went to programs
  • Governance: 14 of 14 board members independent · 9 of 9 filing controls reported
  • Programs: 4 filed program accomplishments · $5.9M in reported program spending
  • Leadership: top reported pay $392K · 21 people listed · 4 of 6 pay-setting controls reported
  • Highest-paid contractors: 4 contractors listed · $524K reported
  • Consistency: 37 of 38 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors, grants, and executive pay
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 15 filed money-flow records
  • Related organizations: 8 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.

Grant-readiness screening is separate from the live rating, not a measure of program quality. Review the source records before making a grant decision.

  • Review — Financial Efficiency: Mission deployment rate scored 55/100.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 36/100.
  • High — Sustainability: Officer compensation ratio scored 9/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • High — Grant Readiness: Federal audit findings: this organization reported findings in its latest federal Single Audit.