Nonprofit · EIN 52-1214782
IMMUNE DEFICIENCY FOUNDATION
Tax-exempt · HANOVER, MD 21076
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $11,404,598 | $8,377,069 | $3,027,529 | $23,311,148 | $1,453,460 | $21,857,688 |
| December 31, 2024 | 990 | $10,131,702 | $9,612,798 | $518,904 | $18,802,131 | $1,362,276 | $17,439,855 |
| December 31, 2023 | 990 | $8,985,857 | $7,402,254 | $1,583,603 | $17,355,217 | $1,438,468 | $15,916,749 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $10,651,366
- Program service revenue
- $45,656
- Investment income
- $707,576
- Net gain from sales of assets
- $171,803
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $609,595
- Compensation of officers, directors and key employees
- $573,837
- Other salaries and wages
- $3,581,698
- Salaries, compensation and benefits (total)
- $5,003,142
- Professional fundraising fees
- $0
- Legal fees
- $11,614
- Accounting fees
- $25,927
- Occupancy
- $101,519
- Travel
- $199,167
- Depreciation
- $91,398
- Program services (functional)
- $5,868,684
- Management and general (functional)
- $1,544,964
- Fundraising (functional)
- $963,421
Balance sheet and other
- Total assets, start of year
- $18,802,131
- Total assets, end of year
- $23,311,148
- Total liabilities, end of year
- $1,453,460
- Net assets, end of year
- $21,857,688
- Land, buildings and equipment
- $169,389
- Publicly traded securities
- $15,171,541
- Net assets without donor restrictions
- $19,441,998
- Net assets with donor restrictions
- $2,415,690
- Gross receipts
- $17,561,718
- Employees
- 46
- Volunteers
- 603
- Year formed
- 1980
- State of legal domicile
- DE
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JOREY BERRY | PRESIDENT & Officer | 40 | $335,604 | $56,876 |
| AIMEE SIMPSON | CHIEF DEV. O Highest-paid employee | 40 | $162,151 | $22,272 |
| SARAH ROSE | CFO Officer | 40 | $154,436 | $26,921 |
| TAMMY BLACK | CHIEF COMM. Highest-paid employee | 40 | $157,990 | $21,182 |
| BRIAN LLOYD | CTO Highest-paid employee | 40 | $145,885 | $30,913 |
| LYNN ALBIZO | PUB. POLICY Highest-paid employee | 40 | $148,985 | $21,932 |
| ALISSA CREAMER | DIR OF EDU & Highest-paid employee | 40 | $139,446 | $24,512 |
| JASON ANGELOS | FINANCE CHAI Trustee or director | 1 | $0 | $0 |
| PETE ATHERTON | FUTURES CHAI Trustee or director | 1 | $0 | $0 |
| COLLEEN DANSEREAU | TRUSTEE Trustee or director | 1 | $0 | $0 |
| MARK DZWONCZYK | TRUSTEE Trustee or director | 1 | $0 | $0 |
| DARCY GOTT | YOUNG ADULT Trustee or director | 1 | $0 | $0 |
| CHARLENE GRABOWSKI | TRUSTEE Trustee or director | 1 | $0 | $0 |
| SETH KAUFMAN | BOARD VICE C Trustee or director, Officer | 1 | $0 | $0 |
| KATE SULLIVAN MD | MAC CHAIR Trustee or director | 1 | $0 | $0 |
6 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ADRIAN MOLLO | TRUSTEE Trustee or director | 1 | $0 |
| ANDY ROBINS | TRUSTEE Trustee or director | 1 | $0 |
| STELLA SAFO | TRUSTEE Trustee or director | 1 | $0 |
| TRACY A SHAW | BOARD CHAIR Trustee or director, Officer | 1 | $0 |
| SONIA VOHNOUT | BOARD SECRET Trustee or director, Officer | 1 | $0 |
| PETER WANG | TRUSTEE Trustee or director | 1 | $0 |
990 for the year ended December 31, 2024: 19 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JOREY BERRY | PRESIDENT & Officer | 40 | $291,976 | $55,291 |
| AIMEE SIMPSON | VP INSTITUTI Highest-paid employee | 40 | $157,876 | $20,059 |
| SARAH ROSE | CFO Officer | 40 | $147,965 | $24,842 |
| BRIAN LLOYD | CTO Highest-paid employee | 40 | $143,863 | $28,724 |
| TAMMY BLACK | VP COMMUNICA Highest-paid employee | 40 | $151,684 | $19,050 |
| LYNN ALBIZO | VP PUBLIC PO Highest-paid employee | 40 | $142,625 | $22,962 |
| CHRISTOPHER DUCKETT | DIRECTOR OF Highest-paid employee | 40 | $126,700 | $29,637 |
| JASON ANGELOS | FINANCE CHAI Trustee or director | 1 | $0 | $0 |
| PETE ATHERTON | FUTURES CHAI Trustee or director | 1 | $0 | $0 |
| COLLEEN DANSEREAU | TRUSTEE Trustee or director | 1 | $0 | $0 |
| CHARLENE GRABOWSKI | TRUSTEE Trustee or director | 1 | $0 | $0 |
| SETH KAUFMAN | BOARD VICE C Trustee or director, Officer | 1 | $0 | $0 |
| KATE SULLIVAN MD | MAC CHAIR Trustee or director | 1 | $0 | $0 |
| ADRIAN MOLLO | TRUSTEE Trustee or director | 1 | $0 | $0 |
| ANDY ROBINS | TRUSTEE Trustee or director | 1 | $0 | $0 |
| STELLA SAFO | TRUSTEE Trustee or director | 1 | $0 | $0 |
| TRACY A SHAW | BOARD CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| SONIA VOHNOUT | BOARD SECRET Trustee or director, Officer | 1 | $0 | $0 |
| PETER WANG | TRUSTEE Trustee or director | 1 | $0 | $0 |
990 for the year ended December 31, 2023: 20 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JOREY BERRY | PRESIDENT & Trustee or director, Officer | 40 | $268,604 | $31,984 |
| SARAH ROSE | CFO Officer | 40 | $140,396 | $29,011 |
| BRIAN LLOYD | CTO Highest-paid employee | 40 | $136,376 | $31,592 |
| AIMEE SIMPSON | VP INSTITUTI Highest-paid employee | 40 | $145,327 | $17,779 |
| TAMMY BLACK | VP COMMUNICA Highest-paid employee | 40 | $142,074 | $18,603 |
| LYNN ALBIZO | VP PUBLIC PO Highest-paid employee | 40 | $127,911 | $27,103 |
| CHRISTOPHER DUCKETT | DIRECTOR OF Highest-paid employee | 40 | $113,790 | $34,050 |
| JASON ANGELOS | FINANCE CHAI Trustee or director | 1 | $0 | $0 |
| PETE ATHERTON | FUTURES CHAI Trustee or director | 1 | $0 | $0 |
| COLLEEN DANSEREAU | TRUSTEE Trustee or director | 1 | $0 | $0 |
| CHARLENE GRABOWSKI | TRUSTEE Trustee or director | 1 | $0 | $0 |
| SETH KAUFMAN | BOARD VICE C Trustee or director, Officer | 1 | $0 | $0 |
| KATE SULLIVAN MD | MAC CHAIR Trustee or director | 1 | $0 | $0 |
| ADRIAN MOLLO | TRUSTEE Trustee or director | 1 | $0 | $0 |
| ANDY ROBINS | TRUSTEE Trustee or director | 1 | $0 | $0 |
| STELLA SAFO | TRUSTEE Trustee or director | 1 | $0 | $0 |
| TRACY A SHAW | BOARD CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| HARPER SPERO | DEVELOPMENT Trustee or director | 1 | $0 | $0 |
| SONIA VOHNOUT | BOARD SECRET Trustee or director, Officer | 1 | $0 | $0 |
| PETER WANG | TRUSTEE Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 7550 TEAGUE RD STE 220, HANOVER, MD 21076-2167
- In care of
- % SARAH ROSE
- Principal officer (990 for 2025)
- JOREY BERRY, 7550 TEAGUE ROAD, SUITE 220, HANOVER, MD 21076
- Signed the 990
- JOREY BERRY, PRESIDENT & CEO
- Phone
- (410) 321-6647
- Website
- WWW.PRIMARYIMMUNE.ORG
- Return prepared by
- BROWN PLUS
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 accomplishments
- IMMUNE DEFICIENCY FOUNDATION PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2025, APPROXIMATELY 34,030 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, GET CONNECTED GROUP MEETINGS, AND TEEN AND YOUNG ADULT ACTIVITIES. THERE WERE 2 MILLION WEBSITE VISITORS, OVER 480,000 VIEWS ON YOUTUBE AND 2,600 COMPROMISED DOCUMENTARY SCREENING REQUESTS. SINCE THE LAUNCH, MORE THAN 14,000 PEOPLE HAVE UTILIZED THE IMMUNE SYSTEM SELF-ASSESSMENT TOOL ON OUR WEBSITE.Expenses $2,949,291 · grants $355,206
- 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.Expenses $1,555,717
- TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000.Expenses $1,363,676 · grants $254,139 · revenue $38,600
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 52-1214782
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1986
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H9CZ)
- Assets (IRS master file)
- $23,311,148
- Income (IRS master file)
- $17,561,718
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $11,404,598 | $8,377,069 | $23,311,148 | XML |
| 990 | December 2024 | $10,131,702 | $9,612,798 | $18,802,131 | XML |
| 990 | December 2023 | $8,985,857 | $7,402,254 | $17,355,217 | XML |
| 990 | December 2022 | $8,852,448 | $7,936,471 | $14,567,941 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS publishes only the latest e-Postcard per organization; earlier years appear here as 990.tax collects the monthly files. 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS.
Questions about IMMUNE DEFICIENCY FOUNDATION
- What is the EIN of IMMUNE DEFICIENCY FOUNDATION?
- The employer identification number (EIN) of IMMUNE DEFICIENCY FOUNDATION is 52-1214782.
- Is IMMUNE DEFICIENCY FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1986.
- Are donations to IMMUNE DEFICIENCY FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does IMMUNE DEFICIENCY FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of IMMUNE DEFICIENCY FOUNDATION due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did IMMUNE DEFICIENCY FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of IMMUNE DEFICIENCY FOUNDATION?
- The 990 for the year ended December 31, 2025 names JOREY BERRY.
- Who are the officers and directors of IMMUNE DEFICIENCY FOUNDATION?
- The 990 for the year ended December 31, 2025 lists 21 people; 7 received compensation from the organization, the highest $335,604 (JOREY BERRY, PRESIDENT &).
- How much revenue does IMMUNE DEFICIENCY FOUNDATION have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $11,404,598, expenses of $8,377,069 and total assets of $23,311,148 at year end.
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