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Jeffrey Modell Centers Network

We established the Jeffrey Modell Centers Network (JMCN) to meet the rising need for referrals and specialized centers for patients identified with Primary Immunodeficiency worldwide. It was our hope that our experts at these centers would improve the quality of life and reduce mortality and morbidity of patients while impacting the field of immunology on a global scale.

Our JMCN experts consistently contribute to our cross-continental network, discovering and sharing invaluable medical developments and encouraging better access to care for more than 285,000 patients. We encourage investigators to connect with other physicians to coordinate studies, develop research programs, and gain a better understanding of genetic mutations to ensure earliest possible diagnosis and meaningful treatment options.

Need an immunologist? Find one of our JMCN Experts by using the search tool on our website.

“Jeffrey’s Insights” Genetic Sequencing Program

In 2019, we introduced our no-cost genetic sequencing pilot program, “Jeffrey’s Insights,” for patients within the Jeffrey Modell Centers Network (JMCN) living with an underlying PI but no genetic diagnosis. The pilot was so successful that we expanded the program globally to our more than 400 JMCN centers in early 2020 to provide an opportunity for sequencing to more patients.

We created “Jeffrey’s Insights” to support our mission of earliest possible diagnosis. Proper genetic sequencing helps to identify specific genetic defects, enhances clinical management, and enables physicians to establish earlier and more effective treatment for their patients.

Nearly half of the patients who have participated in genetic sequencing through “Jeffrey’s Insights” experienced a change in outcome and almost all patients had their treatment(s) changed. These results are an indication of the benefits that genetic sequencing has for the PI community.

It is our hope that the results of “Jeffrey’s Insights,” now and in the future, will encourage better access to genetic sequencing for PI patients around the world and reduce the burden that so many families experience. To read our most recent publication about our genetic sequencing efforts, click here.

Research Grants

We are proud to support research for Primary Immunodeficiencies through grant opportunities that provide funding to advance science and save lives. To date, the Foundation has awarded over $6,000,000 in grant support for groundbreaking research.

Click through each tab to learn how apply for our three research grants: 

1. Translational Research Program
2. Specific Defect Research Program
3. C.H.I.L.D.R.E.N! (Child Health Initiative to Lessen Disease through Research and Education Now)

Translational Research Program

Purpose

  • To support innovative and novel investigations in Primary Immunodeficiency focusing on translational research leading to meaningful clinical application.
  • To advance the growing knowledge of genotype-phenotype correlations and gain a better understanding of the underlying mechanisms of immune function and dysfunction.
  • To support research that will lead to advancement in clinical recognition, diagnostic tools, and innovative therapies that will impact overall health outcomes and improve the quality of life of those affected by Primary Immunodeficiency.

To date, over 450 specific genetic defects have been identified, which have not only helped advance new therapies, but have also been instrumental in advancing our understanding of immunology. It is estimated that as many as 10 million people, if not more, are living with Primary Immunodeficiency worldwide. As such, the time is crucial to support research that will bridge basic scientific discoveries to the development of clinical applications that will impact overall health outcomes. Advancing research that enhances our understanding of the immune system represents one of the single greatest strategies that biomedical science has to offer to identify new therapies and will greatly benefit those living with diagnosed Primary Immunodeficiencies as well as the millions of people that remain undiagnosed.

Eligibility

Grants with the following focus will be strongly considered for awards:

  • Novel Primary Immunodeficiency defects
  • Innovative approaches to early diagnosis - Novel therapeutic strategies
  • Translational impact on patient health (i.e., how a patient will benefit)
  • Reach of the proposed project (i.e., how many patients might benefit)
  • Projects that currently do not have funding and would be otherwise difficult to advance without this award

The Jeffrey Modell Foundation encourages all international and U.S. investigators with the appropriate knowledge and research skill level to apply for this grant. Applications submitted by investigators with vast expertise in Primary Immunodeficiency, as well as young investigators with robust scientific merit will be considered. JMF encourages investigators who are not currently receiving funding from the National Institutes of Health to apply. Only one active grant per investigator is permitted at a time. See the list of historic award recipients and proposal titles here.

Review Process

All applications will be comprehensively reviewed and evaluated by the Jeffrey Modell Centers Network Peer Review Research Committee. The committee will provide an impact score for individual applications based on:

  • Innovation
  • Originality
  • Feasibility
  • Justification of requested budget
  • Translational applicability
  • Relevance to Primary Immunodeficiency
  • Relevance to advancement of the work

Award Information

The number of awards per cycle will be dependent on the strength and merit of applications received and the availability of funds. Individual awards may total up to $250,000 over a two-year period. Funds are not to exceed $125,000 per year per project. Total funds will only support direct costs and cannot be used for institutional overhead. JMF reserves the right to reduce the award amount for any application. To date, a total of 18 grants have been awarded throughout 10 grant cycles. 

Application Deadlines

  • Cycle 11 Start Date - January 16, 2023
  • Letter of Intent Deadline - March 14, 2023
  • Full Application Deadline (for invited investigators) - July 6, 2023
  • Grant Awards - November 30, 2023

Required Application Materials: 

Note: application materials must meet the requirements below. Any applications that exceed the page limits will not be considered.

  1. Letter of Intent: a Letter of Intent (LOI) must be submitted by March 14th, 2023, separate from and prior to the full application. Investigators who have submitted an LOI and have been invited by the JMCN Research Committee to submit a full grant application will be considered for funding. Please download and complete the LOI form at this link, which provides additional instructions.
  2. Application: please download and complete the application.
  3. Research Proposal: please attach a detailed research proposal outlining the specific aims, background, purpose, and goals of the intended project. This proposal should not exceed 6 pages. Tables, figures, and graphs, etc. may also be included as supplemental documentation to support the 6-page proposal. For application re-submission, please include an updated revision statement. Only one application re-submission is permitted.
  4. Budget and Budget Justification: a budget and detailed budget justification must be attached with the application. The budget justification should not exceed 2 pages. 
  5. Curriculum Vitae/Biosketch Please attach your most current curriculum vitae or biosketch, highlighting experience as it relates to your proposed project. Please also list publications in order of relevance to the proposal. Please try to limit your CV or Biosketch to no more than 5 pages.

Application Submission and Inquiries

The Jeffrey Modell Foundation encourages submission of the application and all required materials to research@jmfworld.org. Applicants who prefer to submit a paper-based application may send all materials to the following address or by fax:

Jeffrey Modell Foundation 
780 Third Avenue, 47th Floor 
New York, NY 10017 
Fax: 212-764-4180

All inquiries and logistical questions should be submitted to the Jeffrey Modell Foundation's Scientific Director at research@jmfworld.org.

Specific Defect Research Program

The goal of the Specific Defect program is to support research that studies the mechanisms and presentation of specific defects of the immune system to gain a better understanding of the defects and their impact on overall health outcomes. The JMF patient database includes high numbers of various genotypes around the world, which provides an excellent platform for international collaboration. Investigators working in partnership with JMF will have access to this international database to contact other sites and coordinate joint studies.

Award Information

The Jeffrey Modell Foundation encourages novel investigations to expand upon the current list of Specific Defect grant projects. Awards are granted on a rolling basis throughout the year. Each award amounts up to $50,000 over a two-year project period, with a maximum of $25,000 per year. 

To date, there have been 38 Specific Defect Research Grants awarded. These include:

  1. ARTEMIS
  2. Autoimmune Cytopenias
  3. CARD11
  4. CARD9/CMC
  5. Chronic Mucocutaneous Candidiasis Disease
  6. Common Variable Immunodeficiency
  7. Complete DiGeorge Syndrome
  8. Congenital Agammaglobulinemia
  9. Early Onset Autoimmune Cytopenia
  10. FOXP3/IPEX
  11. FOXP3/Regulatory T cells fulminant viral hepatitis
  12. IL10 Receptor Deficiency
  13. IPEX/IPEX like syndromes
  14. IRF2BP2
  15. LRBA Deficiency
  16. MHC Polymorphisms in CVID
  17. NEMO
  18. Opportunistic Infections
  19. Post-HSCT Idiopathic Pneumonia
  20. RAG1/RAG2 deficiencies
  21. SNP's in MHC
  22. STAT3
  23. Streptococcus Pneumonia​ ​in CVID
  24. VEO-IBD
  25. WES to identify new genetic phenotypes
  26. WGS to identify pathogenic gene mutations underlying PI
  27. WHIM
  28. Whole Genome Sequencing
  29. X-Linked CGD
  30. X-Linked Hyper IgM syndrome
  31. XLA
  32. XMEN
  33. Zap70 deficiency
  34. Fulminant viral hepatitis
  35. ICOSL
  36. STAT1 GOF
  37. Immune defect associated cancer
  38. POU2F2/OCT2

Required Application Materials

  1. Application: please download and complete the application.
  2. Research Proposal: please attach a detailed research proposal outlining the specific aims, background, purpose, and goals of the intended project. This proposal should be approximately 3-4 pages. Tables, figures, and graphs, etc. may also be included as supplemental documentation to support the proposal.
  3. Budget and Budget Justification: a budget and detailed budget justification must be attached with the application. The budget justification should not exceed 2 pages.
  4. Curriculum Vitae/Biosketch: please attach your current curriculum vitae or biosketch, highlighting experience as it relates to your proposed project. Please list publications in order of relevance to the proposal. Please try to limit your CV/biosketch to under 5 pages. 

Application Submission and Inquiries

Applications for this program are accepted and reviewed on a rolling basis, so you may apply at any time. JMF encourages submission of the application and all required materials by email at research@jmfworld.org. Applicants who prefer to submit a paper-based application may send all materials to the following address or by fax:

Jeffrey Modell Foundation  
780 Third Avenue, 47th Floor  
New York, NY 10017  
Fax: 212-764-4180

All inquiries and logistical questions should be submitted to the Jeffrey Modell Foundation's Scientific Director at research@jmfworld.org.

C.H.I.L.D.R.E.N!®

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The purpose of the of c.h.i.l.d.r.e.n! grant is to support research focused on children living with PI throughout the world, while addressing healthcare disparities, especially in developing countries, through education, testing, diagnosis, and treatment. The focus of this grant program is to investigate immunological disorders, infectious disease, initiatives to decrease infant mortality and ultimately improve the quality of life of children affected by Primary Immunodeficiency globally.

Awards are granted on a rolling basis throughout the year. Each award amounts up to $25,000 per year, for up to two years, per grant, following peer-review and approval.

Grant Objectives

  1. To stimulate research by attracting innovative and public health-focused investigations of Primary Immunodeficiency research.
  2. To support innovative investigations in Primary Immunodeficiency diseases and novel clinical strategies to detect Primary Immunodeficiency diseases, and to develop innovative new therapies.
  3. To apply cellular, genomic, and molecular biological principles to Primary Immunodeficiency research; to create new platforms for diagnostics including genome and exome sequencing.
  4. To focus on immunological disorders, control of infectious disease, and infant mortality, especially in developing countries; to seek and promote safe, effective, and appropriate vaccines.
  5. To address healthcare disparities, especially in developing countries, through education, testing, diagnosis, and treatment.
  6. To build upon the Jeffrey Modell Foundation’s existing platforms of critical technology including the TREC and KREC assays for Newborn Screening; to develop laboratory diagnostics or build partnerships with institutions that have existing laboratory diagnostics.
  7. To maximize collaboration through integration with the Jeffrey Modell Centers Network and to replicate successful programs achieved at leading academic medical centers with application to global health; to build partnerships throughout the Network through fellowships, training, symposia, and other continuing medical education–focused initiatives.

Required Application Materials

Application: please download and complete the application.

Research Proposal: please attach a detailed research proposal outlining the specific aims, background, purpose, and goals of the intended project. This proposal should not exceed 3-4 pages. Tables, figures, and graphs, etc. may also be included as supplemental documentation to support the proposal.

Budget and Budget Justification: a budget and detailed budget justification must be attached with the application. The budget justification should not exceed 2 pages.

Curriculum Vitae/Biosketch: please attach your current curriculum vitae or biosketch, highlighting experience as it relates to your proposed project. Please also list publications in order of relevance to the proposal. Please try to limit your CV or biosketch to no more than 5 pages.

Application Submission and Inquiries

Applications for this program are currently accepted and reviewed on a rolling basis, so you may apply at any time. JMF encourages submission of the application and all required materials by email at research@jmfworld.org. Applicants who prefer to submit a paper-based application may send all materials to the following address or by fax:

Jeffrey Modell Foundation 
780 Third Avenue, 47th Floor 
New York, NY 10017 
Fax: 212-764-4180

All inquiries and logistical questions should be submitted to the Jeffrey Modell Foundation's Scientific Director at research@jmfworld.org

We are proud to create and disseminate educational materials for physicians and researchers, nurses, residents, post-doctoral fellows, and other sub-specialists within the field of immunology to encourage awareness and increase knowledge about Primary Immunodeficiency within the healthcare workforce. It’s our hope that these materials help to improve PI management, clinical recognition and care, and save more lives. We also share monthly “Updates from the Lab” on our blog.

Clinical Trial: Do you have Chronic, Congenital, or Cyclical Neutropenia?

A Quick Guide to Activated PI3K Delta Syndrome (APDS)

A Guide for Medical Professionals - Chronic Granulomatous Disorder

  

Diagnostic Algorithm for Specialty Care Physicians

          

OMIM® - Online Mendelian Inheritance in Man®

OMIM® - Online Mendelian Inheritance in Man®


An Online Catalog of Human Genes and Genetic Disorders
OMIM contains information on all known mendelian disorders and over 15,000 genes, with a specific focus on the relationship between phenotype and genotype.

OMIM is authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine.  It is updated daily, and the entries contain copious links to other genetics resources.

Learn more at OMIM.org
 

Interesting Scientific Research

  • The FILL (Following infants with low lymphocytes) study developed as an offshoot and direct result of newborn screening for SCID and T cell lymphopenia (NBS SCID) in the United States.  This study intends to enroll infants who are initially identified during newborn screening (abnormal TREC result on SCID screening) and confirmed by a physician to have lymphopenia.  The study will collect data on 200 infants who are enrolled by April 1, 2018.  The FILL database was created and is maintained by the USIDNET, through a pilot grant provided by the Jeffrey Modell Foundation to the Clinical Immunology Society (CIS).   Patient data can be entered into the FILL Database either by enrollment through an USIDNET center, or through direct physician referral to USIDNET.  All patients enrolled in the study have to be consented through an IRB protocol.

    We strongly urge you to enroll your patients with T cell lymphopenia identified by SCID newborn screening in the FILL study so that there is evidence-based data to better understand, follow and manage infants with lymphopenia.

  • Clinical Trial Opportunity for Patients with Chronic Mucocutaneous Candidiasis
    Chronic Mucocutaneous Candidiasis often results from an underlying immune deficiency that leads to abnormalities in a person’s control of fungal infections such as candida.  Investigators at NIAID are seeking people with chronic mucocutaneous candidiasis (oropharyngeal, esophageal or vulvovaginal candidiasis) that are refractory or intolerant to standard non-intravenous therapies to participate in a clinical research trial.  For additional information please contact Dr. Alexandra Freeman (freemaal@mail.nih.gov) or see https://clinicaltrials.gov/ct2/show/NCT02629419.

  • Monozygotic twins discordant for CVID reveal impaired DNA demethylation during naïve-to-memory B-cell transition

  • 'JEDI' technology awakens new understanding of how immune system works

Clinical Trials, Physician Research Opportunities

  • Ground Breaking News for Patients with LAD-1 deficiency!

Some exciting news just in! Rocket Pharma has disclosed exciting information about their gene therapy trial for patients with LAD-1 deficiency. Please read the summary, which describes the clinical trial, the disease, and the six month data showing the therapy was well tolerated and induced a restoration of CD18 levels.

 

  • X4 Pharmaceuticals planning to start a Phase 3 clinical study: “A Phase 3, Randomized, Double-Blind, Placebo-Controlled, Multicenter Trial of mavorixafor (X4P-001) in Patients with WHIM Syndrome with Open-Label Extension”

WHIM (Warts, Hypogammaglobulinemia, Infections and Myelokathexis) is a rare autosomal dominant primary immunodeficiency disease caused by gain-of-function mutations in the chemokine receptor CXCR4.  CXCR4 mutations induce increased leukocyte homing and retention in the bone marrow resulting in severe chronic neutropenia and lymphopenia.  

X4 Pharmaceuticals is planning to sponsor a 52-week global Phase 3 study to evaluate the safety and efficacy of mavorixafor, a once-daily oral CXCR4 antagonist, in genetically confirmed WHIM patients who are aged 12 years or older.  Mavorixafor is a first-in-class, oral, small molecule antagonist of the CXCR4 chemokine receptor that has demonstrated a favorable safety profile and dose-dependent increases in ANC and ALC in a Phase 2 study. Trial subjects will participate in a one-year trial with an opportunity to continue in the subsequent open label extension.  Travel support to study sites will be provided. 

To support confirming the diagnosis of WHIM, X4 Pharmaceuticals will offer genetic testing at no charge to patients meeting eligibility criteria suggestive for the disease.  For information and support for genetic confirmation of your patients with suspected WHIM, please contact patientinfo@x4pharma.com.

To learn more about X4 Pharmaceuticals, visit their website, at x4pharma.com

  • The FILL (Following infants with low lymphocytes)

This study developed as an offshoot and direct result of newborn screening for SCID and T cell lymphopenia (NBS SCID) in the United States.  This study intends to enroll infants who are initially identified during newborn screening (abnormal TREC result on SCID screening) and confirmed by a physician to have lymphopenia.  The study will collect data on 200 infants who are enrolled by April 1, 2018. The FILL database was created and is maintained by the USIDNET, through a pilot grant provided by the Jeffrey Modell Foundation to the Clinical Immunology Society (CIS).   Patient data can be entered into the FILL Database either by enrollment through an USIDNET center, or through direct physician referral to USIDNET.  All patients enrolled in the study have to be consented through an IRB protocol.

We strongly urge you to enroll your patients with T cell lymphopenia identified by SCID newborn screening in the FILL study so that there is evidence-based data to better understand, follow and manage infants with lymphopenia.

  • Clinical Trial Opportunity for Patients with Chronic Mucocutaneous Candidiasis

Chronic Mucocutaneous Candidiasis often results from an underlying immune deficiency that leads to abnormalities in a person’s control of fungal infections such as candida.  Investigators at NIAID are seeking people with chronic mucocutaneous candidiasis (oropharyngeal, esophageal or vulvovaginal candidiasis) that are refractory or intolerant to standard non-intravenous therapies to participate in a clinical research trial.  For additional information please contact Dr. Alexandra Freeman (freemaal@mail.nih.gov) or see https://clinicaltrials.gov/ct2/show/NCT02629419.

Funny Immunology To Save Lives!

English

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Spanish

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Portuguese

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Russian

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Arabic

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Nurses

Nurses are our first line of defense in recognizing children who may suffer from repeated infections and missed days of school due to Primary Immunodeficiency. They play an essential role in helping our children to stay healthy, educated, and safe! We’ve compiled a list of resources for nurses to share with school communities, families, and others to help recognize the warning signs and encourage proper diagnosis and expert care.

Clinical Trials

Searching for a clinical trial? Check back regularly to see if there’s a fit for your specific case.

SPIRIT® Analyzer Tool

SPIRITLogowithKids-resize-250x133-533edd6fd778c-original.pngSoftware for Primary Immunodeficiency Recognition, Intervention, and Tracking

SPIRIT® is a cost-effective screening tool created for healthcare organizations, hospitals, and physician groups to help identify undiagnosed patients living with a Primary Immunodeficiency.

The SPIRIT® Analyzer Software enables healthcare professionals to notify patients who are at risk so that they may receive further assessment and/or testing to diagnose, treat, improve quality of life, and reduce healthcare costs more efficiently. SPIRIT® can screen and identify high-risk patients by mining electronic hospital records (EHR) and matching 1,400 ICD-10 codes and 17,868 pharmacy codes to the 10 Warning Signs of PI.

To download the SPIRIT® Analyzer Software, please send us an email at spirit@jmfworld.org. In your email, please include the following information:

  • First and last name
  • Company or institution
  • Title
  • Email address
  • Mailing address
  • Phone number
  • How you found out about SPIRIT®

Once we receive your email, we’ll send you a Memorandum of Understanding, confirming the guidelines of the SPIRIT® Analyzer Software.

Read the full manuscript, Calculation of a Primary Immunodeficiency “Risk Vital Sign” via Population-Wide Analysis of Claims Data to Aid in Clinical Decision Support, to get better acquainted with the power of SPIRIT®!

Questions about SPIRIT®? Download the FAQs

SPIRIT® is a Registered Trademark issued by the United States Patent and Trademark Office to the Jeffrey Modell Foundation. The SPIRIT® Software is provided as a public service. Any unauthorized usage, duplication, modification, or transfer of this material without expressed written consent of the Jeffrey Modell Foundation, is strictly prohibited.

At the Medical Academy, you will find educational materials for physicians and nurses, research applications, the latest achievements from our Jeffrey Modell Centers Network and
  • At the Medical Academy, you will find educational materials for physicians and nurses, research applications, the latest achievements from our Jeffrey Modell Centers Network and
  • genetic sequencing program, and gain access to our SPIRIT® Analyzer Software.