irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $579KBASIC AND CLINICAL RESEARCH SUPPORT AT NUMEROUS EDUCATIONAL INSTITUTIONS AND HOSPITALS THROUGHOUT THE UNITED STATES AND WORLD-WIDE AS REPORTED IN ACCOMPANYING SCHEDULE F AND SCHEDULE I. IN ADDITION, THE FOUNDATION PROVIDED FUNDING TO REGIONAL AND NATIONAL PATIENT ORGANIZATIONS GLOBALLY.
named programs · 8 · from sources
What they call their work
10 Warning Signs of PI
Public awareness campaign to promote early diagnosis through education on key symptoms of Primary Immunodeficiency
4 Stages of Testing
Evidence-based diagnostic framework for physicians to identify and confirm Primary Immunodeficiency Diseases
JMF Speaker Series
Global virtual educational events for healthcare professionals and patients on advances in PI diagnosis and treatment
Jeffrey Modell Centers Network (JMCN)
Global network of medical centers advancing research, diagnosis, and treatment of Primary Immunodeficiency Diseases
KIDS DAYS
Program connecting children with PI and their families to medical expertise and peer support
Research & Education Grants
Funding for basic and clinical research, physician education, and patient organization support worldwide
SPIRIT® Analyzer
AI-powered screening software to aid in the early detection of Primary Immunodeficiency Diseases
WIN Grant Program
Support for local patient organizations to strengthen advocacy, education, and community outreach
activities · 6 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducting clinical trials for gene therapy in immunodeficiency diseasesConducts a Phase 1/2 clinical trial to evaluate EN-374, an in vivo gene therapy for X-linked chronic granulomatous disease (X-CGD), and recruits adult males with X-linked CGD at multiple sites in the United States and United Kingdom.
- Facilitating international collaboration among immunologistsConnects 930 physicians across 93 countries to advance diagnosis and treatment of Primary Immunodeficiency through collaboration, research, and expanded access to care.
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HIV Research and Advocacy Funding 1 activity
- Funding research and patient organizations in Primary ImmunodeficiencyFunds basic and clinical research at educational institutions and hospitals in the United States and worldwide, and provides financial support to regional and national patient organizations globally to advance understanding and treatment of immunodeficiency diseases.
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Patient and Researcher Conferences 1 activity
- Hosting global virtual speaker series for healthcare professionalsOrganizes and hosts a global virtual speaker series that brings together physicians, researchers, and healthcare professionals to share advances in Primary Immunodeficiency diagnosis, treatment, and research, including expert discussions on historical and future developments.
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Healthcare Provider Directories and Clinical Support Services 1 activity
- Maintaining a global directory of expert immunologistsMaintains and provides access to a global directory of over 930 expert immunologists specializing in Primary Immunodeficiency to help patients locate specialized care.
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Disease-Specific Clinical & Patient Education 1 activity
- Producing and distributing educational materials for Primary ImmunodeficiencyProvides regional Primary Immunodeficiency toolkits, educational materials, scientific publications, and multilingual resources such as the 10 Warning Signs guide through an online library and resource hub to support diagnosis and awareness.
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Uncategorized 1 activity
- Developing and maintaining diagnostic frameworks for Primary ImmunodeficiencyDeveloped the 10 Warning Signs of Primary Immunodeficiency in 1993 and the 4 Stages of Testing, an evidence-based diagnostic framework, both regularly updated and translated into multiple languages to promote early diagnosis globally.
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financials · form 990 · fy2024
revenue
Total revenue$10.21M
Contributions & grants$8.80M86%
Program service revenue$00%
Investment income$1.41M14%
Other revenue$0
expenses
Total expenses$9.27M
Program expenses92%
Admin / overhead5%
Fundraising3%
Salaries & benefits$2.52M
Grants paid out$2.17M
Largest expense lineCompensation
balance sheet
Total assets$46.04M
Cash$9.56M
Investments$30.07M
Liabilities$6.27M
Net assets$39.77M
Liquid reserves51.3 mo
3 years on record · 2020–2024 · YoY revenue +6.3%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 5
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| FREDERICK MODELL | President | 40 | $717K |
| VANESSA TENEMBAUM | EXECUTIVE DIRECTOR | 40 | $354K |
| JESSICA QUINN | SCIENTIFIC DIRECTOR | 40 | $201K |
| CHRISTOPHER SIMS | CHIEF FINANCIAL OFFICER | 40 | $198K |
| ROGER DAVILLA | — | 40 | $197K |
board members · 20
- ALLYSON ALAN GALISHOFF — Director
- BETTINA EMDEN — Director
- BRENDA GARY LAVIGNA — Director
- CAROL JAMES RANDEL — Director
- DEBBE LONGO STROUT — Director
- DEBBI MAX LEBERSFELD — Director
- FAISAL KHALID — OVERSEER
- FELICE AXELROD — Director
- FRANN ERIC FRANCIS — Director
- GENE MANHEIM — Director
- GREG SMITH — Director
- HASSAN AHMED — Director
- HELEN CHAITMAN ESQ — Director
- JASON SHUMAN — Director
- JENNIFER CHAITMAN DVM — Director
- JODI PULICE — Director
- JONATHAN MECHANIC ESQ — Director
- LISA STEPHEN LAWRENCE — Director
- LISA STEPHEN SHUMAN — Director
- LISA WILLIAM WEXLER — Director
relationships · 13
Who they work with
- American Red Cross Partner — Collaborated with The Jeffrey Modell Foundation to develop the 10 Warning Signs of Primary Immunodeficiency.
- Charity Navigator Government — Evaluated The Jeffrey Modell Foundation and awarded a four-star rating in 2025.
- Charity Navigator Government — Evaluator that awarded The Jeffrey Modell Foundation a four-star rating in 2025.
- Charity Navigator Government — Rated The Jeffrey Modell Foundation with a four-star rating for 10 consecutive years.
- Charity Navigator Government — Rated The Jeffrey Modell Foundation with a four-star rating for the 10th consecutive year.
- Charity Navigator Government — Rated The Jeffrey Modell Foundation with a four-star rating in 2025
- Charity Navigator Government — Rated The Jeffrey Modell Foundation with a four-star rating in 2025.
- Charity Navigator Government — Rated The Jeffrey Modell Foundation with four stars in 2025
- Ensoma Partner — Collaborates with Ensoma on a clinical trial for in vivo gene therapy for X-linked CGD.
- Grifols Partner — Collaborates on the ASPIRE Award to support clinical research in immunodeficiency diseases.
- The Columbia University Vagelos College of Physicians and Surgeons Partner — Jointly provides accreditation for the JMF Speaker Series through the ACCME
- numerous educational institutions and hospitals Partner — Receives research support funding from the Foundation
- regional and national patient organizations Partner — Receives funding from the Foundation for patient support activities
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Global Knowledge Dissemination Through Expert Networksmethodology: expert-knowledge-disseminationBy connecting a global network of physicians and experts through virtual speaker series and shared toolkits, the foundation improves diagnosis and treatment of Primary Immunodeficiency, because standardized, accessible knowledge transfer accelerates clinical adoption and care equity.
- Integrated Research, Advocacy, and Education for Early Diagnosismethodology: integrated-research-and-advocacyBy combining research funding, physician education, public awareness, advocacy, and newborn screening, the foundation accelerates early diagnosis of Primary Immunodeficiency and links patients to life-saving treatments, because early intervention improves clinical outcomes and quality of life.
- Structured Diagnostic Pathways for Improved Accuracymethodology: evidence-based_diagnostic_pathwayBy implementing a standardized, evidence-based, four-stage diagnostic framework and the 10 warning signs checklist, the foundation enables earlier and more accurate diagnosis of Primary Immunodeficiency, because structured clinical pathways reduce delays and misdiagnosis.