IMMUNE DEFICIENCY FOUNDATION

EIN: 521214782 501(c)(3) Medical Research

HANOVER, MD

Total Revenue
$10,131,702
Total Expenses
$9,612,798
Total Assets
$18,802,131
Net Assets
$17,439,855
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Financial Trends

Organization Details

Formation Year
1980
Legal Domicile
DE
Principal Officer
JOREY BERRY
Phone
4103216647
Tax Period
2024-01-01 to 2024-12-31

IMMUNE DEFICIENCY FOUNDATION, founded in 1980, is a mid-sized nonprofit in the Medical Research sector that reported $10.1M in total revenue in fiscal year 2024. Revenue grew 13% year-over-year, indicating healthy expansion. Expenses of $9.6M left a modest 5% surplus.

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.

Program Service Accomplishments

Program 1
Expenses: $4,918,677

IMMUNE DEFICIENCY FOUNDATION (IDF) PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2024, APPROXIMATELY 30,700 INDIVIDUALS WERE...

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IMMUNE DEFICIENCY FOUNDATION (IDF) PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2024, APPROXIMATELY 30,700 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, IDF GET CONNECTED GROUP MEETINGS, TEEN AND YOUNG ADULT ACTIVITIES AND THE IDF PI CONFERENCE. THERE WERE 997 ATTENDEES AT THE PI CONFERENCE (THE FIRST IN-PERSON PI CONFERENCE SINCE 2019), WHERE IDF DEBUTED OUR DOCUMENTARY, "COMPROMISED: LIFE WITHOUT IMMUNITY". IDF PROVIDED MORE THAN 265 HOTEL ROOM AND FLIGHT SCHOLARSHIPS FOR PI CONFERENCE ATTENDEES. MORE THAN 1.3 MILLION IDF WEBSITE SESSIONS WERE ACCESSED FOR INFORMATION, EVENTS, PODCASTS AND SUPPORT AND MORE THAN 625 IMMUNE SYSTEM SELF- ASSESSMENTS WERE SUBMITTED VIA THE WEBSITE.

Program 2
Expenses: $1,143,977

THE PI COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING...

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THE PI COMMUNITY TURNS TO IDF FOR 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. IDF'S PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 1,900 QUESTIONS ON 300 DIFFERENT TOPICS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES 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 2024, 850 INDIVIDUALS MET WITH AND SENT MORE THAN 2,700 LETTERS AND MESSAGES 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.

Program 3
Expenses: $1,047,079 Revenue: $15,800

TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, IDF HAS SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING EXHIBITING AT TEN...

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TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, IDF HAS SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING EXHIBITING AT TEN MEDICAL CONFERENCES IN 2024, PROVIDING INFORMATION AND RESOURCES TO HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST ABOUT PATIENT-SPECIFIC QUESTIONS TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IDF CONDUCTS NATIONAL SURVEYS AND FOCUS GROUPS OF PATIENTS, PHYSICIANS, AND OTHER HEALTHCARE PROFESSIONALS, BUILDING A COLLECTION OF QUANTIFIABLE DATA RELATED TO PRIMARY IMMUNODEFICIENCY. IN 2024, OVER 1,000 INDIVIDUALS PARTICIPATED IN AN IDF PATIENT SURVEY TO GATHER DATA ON IG TREATMENT. THERE WERE FOUR PUBLICATIONS IN 2024 USING USIDNET DATA. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2024, TOTALING OVER 159,000.

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Trantor Score

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $9,567,648
Program Service Revenue $15,870
Investment Income $548,184
Other Revenue $0
TOTAL REVENUE $10,131,702

Expense Breakdown

Grants Paid $564,056
Salaries & Benefits $4,787,765
Fundraising Expenses $1,074,601
Program Expenses $7,109,733
Other Expenses $4,260,977
TOTAL EXPENSES $9,612,798

Year-over-Year Comparison

2024 2023 Change
Revenue $10,131,702 $8,985,857 +0.1%
Expenses $9,612,798 $7,402,254 +0.3%
Net Income $518,904 $1,583,603 -0.7%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
12
Independent Members
12
Employees
53
Volunteers
698

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
5
$520,074
Total Directors
12
$0
Key Employees
0
$0
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
JOREY BERRY PRESIDENT & 40.00
Officer
$291,976 $55,291 $347,267
AIMEE SIMPSON VP INSTITUTI 40.00
Highest
$157,876 $20,059 $177,935
SARAH ROSE CFO 40.00
Officer
$147,965 $24,842 $172,807
BRIAN LLOYD CTO 40.00
Highest
$143,863 $28,724 $172,587
TAMMY BLACK VP COMMUNICA 40.00
Highest
$151,684 $19,050 $170,734
LYNN ALBIZO VP PUBLIC PO 40.00
Highest
$142,625 $22,962 $165,587
CHRISTOPHER DUCKETT DIRECTOR OF 40.00
Highest
$126,700 $29,637 $156,337
JASON ANGELOS FINANCE CHAI 1.00
Director
$0 $0 $0
PETE ATHERTON FUTURES CHAI 1.00
Director
$0 $0 $0
COLLEEN DANSEREAU TRUSTEE 1.00
Director
$0 $0 $0
CHARLENE GRABOWSKI TRUSTEE 1.00
Director
$0 $0 $0
SETH KAUFMAN BOARD VICE C 1.00
Officer Director
$0 $0 $0
KATE SULLIVAN MD MAC CHAIR 1.00
Director
$0 $0 $0
ADRIAN MOLLO TRUSTEE 1.00
Director
$0 $0 $0
ANDY ROBINS TRUSTEE 1.00
Director
$0 $0 $0
STELLA SAFO TRUSTEE 1.00
Director
$0 $0 $0
TRACY A SHAW BOARD CHAIR 1.00
Officer Director
$0 $0 $0
SONIA VOHNOUT BOARD SECRET 1.00
Officer Director
$0 $0 $0
PETER WANG TRUSTEE 1.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 No data No data No data No data
2024 $10,131,702 $9,612,798 $18,802,131 $518,904
2023 $8,985,857 $7,402,254 $17,355,217 $1,583,603
2022 $8,852,448 $7,936,471 $14,567,941 $915,977
2021 $9,938,471 $8,023,615 $14,287,227 $1,914,856
2020 $6,782,778 $6,532,541 $12,389,861 $250,237
2019 $9,460,017 $8,601,612 $11,518,997 $858,405
2018 $6,350,758 $6,409,783 $9,299,139 $-59,025
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