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Our Journey

Mission

Vicki and Fred Modell established the Jeffrey Modell Foundation, a 501(c)3 nonprofit organization, in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency – a genetic condition that is chronic, serious, and often fatal.  JMF is a global patient organization devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures - through clinical and basic research, physician education, patient support, advocacy, public awareness and newborn screening.

Jeffrey Modell
1970-1986

“If I can stop one heart from breaking
I shall not live in vain,
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin unto his nest again,
I shall not live in vain.”
                                                             —Emily Dickinson

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Focus

As a Foundation, we understand how important it is to have a strong focus in everything we do. So each and every day, we keep our minds and our hearts set on:

  • Making a world of difference in the lives of patients with PI.
  • Affirming our absolute commitment to clinical and basic research in order to better understand and treat PI.
  • Serving as a national and international source for the dissemination of information and education into the diagnosis and treatment of genetic immunodeficiencies.
  • Serving as a tireless, compassionate advocate on behalf of patients and families to assure their access to excellent and comprehensive care.
  • Promoting public awareness of PI diseases through programs involving our lawmakers as well as lay, scientific, and medical communities.
  • Affirming our commitment to turn pain, despair, and suffering of immunodeficient children and adults into comfort and hope. 

Our Journey of Hope, Advocacy & Action

JMF has been fortunate to achieve many milestones over the years. Each one of the stepping-stones along our journey has helped us reach our destination, accomplish our mission, and serve our community.

To learn about our Journey of Hope, Advocacy & Action select one of the initiatives below: 

  • Research and Clinical Care

    Jeffrey Modell Centers Network

    The Network consists of:

    • 781 Expert Physicians at 356 research, diagnostic and referral centers, in 273 cities, 86 countries, spanning 6 continents.
    • 171,439 patients with a Primary Immunodeficiency are being followed at Jeffrey Modell Centers
    • 90,867 patients identified with specific Primary Immunodeficiency defects.

    JMF at “Best” Children’s Hospitals

    U.S. News and World Report ranks the best children’s hospitals, medical schools and immunology graduate Programs in the United States.

    There are Jeffrey Modell Centers at:
    • 11 of the Top 12 Best Children’s Hospitals.
    • 11 of the Top 11 Best Medical Schools.
    • 9 of the Top 9 Best Immunology Graduate Programs.

    Translational Research Program

    • 10 peer-reviewed Translational Research Grants have been awarded.

    Specific Defects Study

    • JMF has a large database of patients, categorized by genetic diagnosis.  We can identify where patients are being treated, who is treating them, and how they are being treated.  Investigators collaborate within the Jeffrey Modell Centers Network to coordinate studies.  Sixteen awards have been made. Studies have been initiated in RAG1, RAG2, X-Linked Hyper IgM, ZAP70, IPEX, and Chronic Mucocutaneous Candidiasis Disease (CMCD), FOXP3/IPEX, CVID, Streptococcus Pneumonia, WES to identify next generation of Immunodeficiencies, X-Linked CGD, X-MEN, CARD9 Deficiency, IL10 Receptor Deficiency, and more to follow.

    C.H.I.L.D.R.E.N.!® (Child Health Initiative to Lessen Disease Through Research and Education Now!)

    • C.H.I.L.D.R.E.N®, Child Health Initiative to Lessen Disease Through Research and Education Now! is a research program to encourage investigations that aim to alleviate disease, seek cures and ultimately improve the quality of life of children affected with Primary Immunodeficiency throughout the world. The focus of this grant program is to investigate immunological disorders, control of infectious disease and promote initiatives to decrease infant mortality. The program specifically will address healthcare disparities through education, testing, diagnosis, and treatment.
    • Eight grants have already been awarded.

    Bill & Melinda Gates Foundation and Jeffrey Modell Foundation Surveillance Study to Eradicate Polio Worldwide

    • The Bill & Melinda Gates Foundation and the Jeffrey Modell Foundation have launched a working collaboration to eradicate polio worldwide.
    • The partnership calls for the Jeffrey Modell Foundation to conduct a surveillance study of immunodeficient patients to identify poliovirus excreters. The patients are being recruited from 25 of our Centers in the Jeffrey Modell Centers Network.
    • The surveillance study is coordinated by the Polio Antiviral Initiative (PAI) at the Task Force for Global Health.  Partnering with the Jeffrey Modell Foundation is the World Health Organization (WHO), U.S. Centers for Disease Control and Prevention (CDC), and the Bill and Melinda Gates Foundation.
  • Physician Education

    winMD ~ for physicians:

    • Looking for PI?... Find A Doctor! WinMD is a Program that provides funding to medical students, fellows, researchers, and physicians to support travel to national and international medical conferences that highlight Primary Immunodeficiencies. The goal is to enhance physician education, promote awareness, and to create lively dialogue with colleagues.

    winRN ~ for nurses:

    • Looking for PI?... Find A Nurse! WinRN is a Program that provides funding to nurses for travel to national and international medical conferences that highlight Primary Immunodeficiencies. The goal is to enhance education, promote awareness, and to create lively dialogue with colleagues.

    Jeffrey Modell Centers Summit ~ Berlin, Germany ~ July 17-20, 2013: ~ for physicians:

    • Organized and hosted the first Jeffrey Modell Centers Summit. 200 of the Jeffrey Modell Center Directors from 78 countries participated.  The three day scientific symposium culminated in the “Berlin Declaration”.  215 of the world’s expert immunologists signed the Declaration for immediate implementation of Newborn Screening for SCID and continuing support for physician education and public awareness about Primary Immunodeficiency, including SCID. This document is shared with government health officials worldwide.

    • Organized and hosted the first World Immunology Conference at Rockefeller University. 360 Expert immunologists from 64 countries participated.

    • Organized the first Middle East Workshop with representatives from 20 Countries in the region.

    • Organized World Health Organization & IUIS Symposia in France, England, Austria, Ireland, Switzerland, Portugal, Hungary, and Jackson Hole, Wyoming, attended by pre-eminent Immunologists and researchers worldwide

    • Robert A. Good & Jeffrey Modell International Fellowship Program awarded four fellowships, funding the brightest young investigators around the world, focused on PI and stem cell transplantation

    • Organized, funded, and hosted more than 150 physician Symposia, Grand Rounds, and CME Conferences at Academic Teaching Hospitals throughout the United States and worldwide..

    • The Jeffrey Modell Foundation and its Medical Advisory Board created the 10 Warning Signs of PI and a Physician Algorithm (4 Stages of Testing) in the early 1990’s. The 10 Warning Signs have recently been revised to reflect medical advances in the knowledge of these diseases. They are now translated into more than 50 languages.

    • Educational Materials developed with NIAID, NICHD, NHLBI, and CDC, have been distributed annually to pediatricians, internists, family practice physicians, and sub-specialists nationwide for the last 26 years

  • Patient Support

    World Immunodeficiency Network (WIN)

    • JMF’s WIN Program has awarded nearly 200 grants to more than 60 patient groups in many countries throughout the world. WIN grants fund medical conferences, workshops, Websites, KIDS Days, as well as, creating, printing, and distributing educational materials, and so much more. A prestigious independent Advisory Board peer reviews all WIN grant applications.

    KIDS Days

    • The KIDS Day Program has provided days of sharing, caring, hope and fun for thousands of Kids with Immune DeficiencieS for KIDS from 2-102.  KIDS Days, provided at no cost to patients and their families, give these children and adults an opportunity to interact with other patients, as well as, their physicians and nurses in a fun and casual environment. There have been more than 600 KIDS Days, since the beginning of the Program in 1987.

    SPIRIT® 2.0:

    • SPIRIT, Software for Primary Immunodeficiency Recognition, Intervention, and Tracking, is a screening tool used by healthcare organizations, hospitals and physician group practices across the country for the identification of undiagnosed patients with Primary Immunodeficiency. SPIRIT® has been recently updated to include 2,542 new NDC codes and 6 new HCPCS codes for patient identification. SPIRIT® is a registered protected name owned by the Jeffrey Modell Foundation, and is recognized by the U.S. Patent and Trademark Office.

    Educational Materials

    • The Jeffrey Modell Foundation and its Medical Advisory Board created the 10 Warning Signs of PI and the Physician Algorithm (4 Stages of Testing) in the early 1990’s. The 10 Warning Signs has recently been revised to reflect medical advances in the knowledge of these diseases. They are now translated into more than 50 languages.

    • The “10 Warning Signs of PI” posters have been distributed to pediatricians, internists, family practice physicians, and sub-specialists Nationwide for the last 25 years.

    • The Jeffrey Modell Foundation has created many educational materials including, an “Immune System Poster” about PI. This poster, used as a learning tool, has been distributed to all school nurses and daycare centers numerous times, throughout the United States.

  • Awareness

    PSA Campaign

    • The JMF initiated the first Public Service Advertising Campaign in 2004 to raise awareness of Primary Immunodeficiency. Since then, several new campaigns have been created including our current PSA Campaign When I Grow Up”. The Campaign continues to be widespread and is prominently featured on TV, radio, airports, bus shelters, shopping malls, magazines, Taxi TV, and even large billboards in Times Square. To date, this program has generated over $340 million in donated media.

    People Magazine Cover

    • The When I Grow Up” PSA's have been featured on the cover of PEOPLE Magazine in 9 regions of the United States. This is a Four Page Cover Wrap that has been sent to 1000’s of physician offices for 12 issues, over a 3 month period.

  • Newborn Screening

    Newborn Screening for Severe Combined Immune Deficiency (SCID)

    JMF supported and funded population based Newborn Screening for SCID. To date we have accomplished the following:

    • 3.9 million newborns per year are in states that currently screening for SCID or are committed to full implementation with a 2016 start date.
    • 100% of the newborns in the U.S. are in states currently screening or preparing to begin.

    Newborn Screening Economic Analysis

    • A working Algorithm or “Decision Tree” was created by the Jeffrey Modell Foundation to provide government agencies with a usable tool to assist in the decision process and the economics to add SCID screening to their national newborn screening programs.

    Roots & Wings Program

    • “Roots & Wings” was created to work hand-in-hand with the Newborn Screening for SCID statewide efforts. This Program is for the children who have been identified at birth with a life threatening condition like SCID or other related T-Cell Lymphopenias. The “Roots & Wings” Program provides travel (the “Wings”) and related support (the “Roots”) to families whose child might need a bone marrow transplant and have to travel a great distance for this life-saving procedure. Families often have to stay in a Ronald McDonald House for many months, and they may not have the funds to do so... designed to make life easier for these families, reduce the burden, and enable the child to have a second chance at life.
  • Advocacy

    Congress and White House Briefing

    • Twenty-six years of advocacy for PI at the Senate and House Appropriations Committees on Health: advocating for more basic and clinical research, national physician education and public awareness programs, and adding newborn screening for SCID to the National Core Panel.

    • Vicki and Fred Modell participated in a White House briefing on the subject of banning genetic discrimination in the workplace.

    • Established annual “Primary Immunodeficiency Awareness Week” through a Joint House and Senate Resolution in the United States Congress

    • Established “Primary Immunodeficiency Awareness Day” at the EU Parliament.

    Calls to Action

    • European Union – Initiated “Call to Action” at the EU Parliament generating more than 300 signatories to advocate for a European physician education and public awareness campaign. A final report, “Driving Diagnosis for Optimal Care”, was published, as well as a “Tool Kit” for government advocacy and an Ambassador Program for implementation.

    • Latin America – Initiated a “Call to Action” at the Latin American Summit Conference of Experts and Government Officials (LATAM), in Mexico City, generating more than 500 signatures. A specific plan for Latin American countries was developed to raise public awareness and educate physicians to achieve earliest possible diagnosis, provide equal access to care and treatment, and to encourage more research of Primary Immunodeficiencies in Latin America.

    • Africa – Initiated a “Call to Action” at the meeting of the African Society for Immune Deficiencies (ASID), in Tunisia, generating more than 100 signatures of physicians and government health officials. A specific plan for African nations was developed to raise public awareness and educate physicians to achieve earliest possible diagnosis, provide equal access to care and treatment, and to encourage more research of Primary Immunodeficiencies in Africa.

    • Berlin Declaration The Jeffrey Modell Centers Summit, a three day scientific symposium, culminated in the “Berlin Declaration”.  215 of the world’s expert immunologists signed the Declaration to encourage immediate implementation of Newborn Screening for SCID, and to continue support for physician education and public awareness about Primary Immunodeficiency, including SCID. This document is shared with government health officials worldwide.

  • Permanent Endowments
    • Jeffrey Modell Immunology Center at Harvard Medical School
    • Endowed Chairs at:
      • Children’s Hospital Boston
      • Children’s Hospital Seattle
      • Children’s Hospital of Philadelphia
      • Children’s Hospital New Orleans
    • Endowed Fellowship Program at Children’s Hospital Seattle
    • Endowed Immunology Prize at Harvard Medical School and Mount Sinai School of Medicine
    • 25 Post-Doctoral Fellowships Granted Worldwide
    • 18 Jeffrey Modell Summer Scholars at Harvard Medical School and Rockefeller University

  • Publishing
    • Primary Immunodeficiencies worldwide: an updated overview from the Jeffrey Modell Centers Global Network 
      Vicki Modell, Jessica Quinn, Jordan Orange, Luigi D. Notarangelo, Fred Modell 
      Immunologic Research, January 2016, Springer Science + Business Media

    • Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery
      Vicki Modell, Megan Knaus, Fred Modell, Chaim Roifman, Jordan Orange, Luigi D. Notarangelo
      Immunologic Research, March 2014, Springer Science + Business Media

    • An analysis and decision tool to measure cost benefit of newborn screening for severe combined immunodeficiency (SCID) and related T-cell lymphopenia
      Vicki Modell, Megan Knaus, Fred Modell
      Immunologic Research, March 2014, Springer Science + Business Media

    • Global study of primary immunodeficiency diseases (PI) – diagnosis, treatment, and economic impact: an updated report from the Jeffrey Modell Foundation
      Vicki Modell, Bonnie Gee, David B. Lewis, Jordan S. Orange, Chaim M. Roifman, John M. Routes, Ricardo U. Sorensen, Luigi D. Notarangelo, Fred Modell
      Immunologic Research, September 2011, Springer Science + Business Media

    • From Genotype to Phenotype: Further Studies Measuring the Impact of a Physician Education and Public Awareness Campaign on Early Diagnosis and Management of Primary Immunodeficiencies
      Vicki Modell, Diana Puente, Fred Modell
      Immunologic Research, January 2009, Springer Science + Business Media

    • The impact of a physician education and public awareness campaign on the diagnosis and management of primary immunodeficiencies
      Vicki Modell, Diana Pickett, Ian Leighton, Fred Modell
      Immunologic Research, December 2007, Humana Press 

    • Immunology today and new discoveries: building upon legacies of Dr. Robert A. Good
      Fred Modell – Robert A. Good Immunology Symposium
      Immunologic Research, July 2007, Humana Press

    • The impact of physician education and public awareness on early diagnosis of primary immunodeficiencies.
      Fred Modell - Robert A. Good Immunology Symposium
      Immunologic Research, July 2007, Humana Press

  • Awards
    • 2016: "Best Disease Education Website" award presented by DTC National and Health Monitor Network 

    • 2016: '4-Star Rating', the highest honor from Charity Navigator (America’s premier independent charity evaluator) "for strong financial health, commitment to accountability and transparency, best practices, executes its mission in a financially efficient way, exceeds industry standards and outperforms most charities. This exceptional distinction sets JMF apart from its peers and demonstrates to the public JMF’s trustworthiness."
      New York City, New York  

    • 2015: American Academy of Allergy Asthma and Immunology (AAAAI) Distinguished Laypersons Award to Vicki and Fred Modell in recognition of service, dedication, and leadership supporting Primary Immunodeficiency awareness and researc
      Houston, Texas 

    • 2015: "Outstanding Achievement in Web Development" award presented by the Web Marketing Association 

    • 2015: "Outstanding Website" award in the Internet Advertising Competition (IAC) presented by the Web Marketing Association 

    • 2013: '4-Star Rating', the highest honor from Charity Navigator (America’s premier independent charity evaluator) for sound fiscal management, and commitment to accountability and transparency
      New York City, New York 

    • 2013: Champions of Newborn Screening’ Award presented by the Association of Public Health Laboratories
      Atlanta, Georgia

    • 2007: The Robert A. Good Society Achievement Award
      Boston, Massachusetts

    • 2006: The Canadian Immunodeficiency Society Award
      Toronto, Canada

    • 2006: ‘Public Service Award’ presented by the American Association of Immunologists (AAI) in recognition of their extraordinary support for and advocacy of Immunological Research
      Boston, Massachusetts 

    • 2005: ‘Time to Shine’ Award presented by Bayer Biological Products
      Bonita Springs, Florida

    • 2005: ‘Certificate of Honour’ for their outstanding contributions to the advancement of humanitarian endeavor and medicine at the Rambam Medical Center
      Haifa, Israel

    • 2004: International Union of Immunological Societies (IUIS) Award presented at the International Congress of Immunology, in honor of their contributions to the field of immunology
      Montreal, Canada

    • 2003: The Robert A. Good Leadership Award
      St. Petersburg, Florida

    • 1999: ‘Century Achievement Award’, presented by the Division of Clinical Immunology at the Mount Sinai Medical Center
      New York City, New York

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