The Jeffrey Modell Foundation Headquarters is rich with history; the history of a brave family, the story of their journey that lead this Foundation to where it is today.
This is my home away from home, a place that I can come to when I seek inspiration. I hope that by reading about our Founder, and my friend Jeffrey,
you will be motivated by his plea for us to "Do Something!" and that you too, will find inspiration for your own 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
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
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:
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:
The Network consists of:
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 a lively dialogue with colleagues.
Looking for PI?... Find A Nurse!
Organizes hosts Jeffrey Modell Centers Summit. Hundreds of the Jeffrey Modell Center Directors from dozens of countries participate. Hundreds of the world’s expert immunologists sign declarations for immediate implementation of Newborn Screening for SCID and continuing support for physician education and public awareness about Primary Immunodeficiency, including SCID. These documents are 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
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 30+ years.
JMF’s WIN Program has awarded over 250grants 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.
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, 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.
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
The “10 Warning Signs of PI” posters have been distributed to pediatricians, internists, family practice physicians, and sub-specialists Nationwide for the past 30+ 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.
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 $620 million in donated media.
JMF supported and funded population-based Newborn Screening for SCID. To date we have accomplished the following:
Over thirty 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.
European Union – Initiated “Call to Action” at the EU Parliament generating more than 300 signatories to advocate for
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
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
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.
Global report on primary immunodeficiencies: 2018 update from the Jeffrey Modell Centers Network on disease classification, regional trends, treatment modalities, and
Vicki Modell, Jordan S. Orange, Jessica Quinn, Fred Modell
Immunologic Research, 2018, Springer Science + Business Media
Modeling strategy to identify patients with primary immunodeficiency utilizing risk management and outcome measurement
Vicki Modell, Jessica Quinn, Grant Ginsberg, Ron Gladue, Jordan Orange, Fred Modell
Immunologic Research, February 2017, Springer Science + Business Media
Patients with Primary immunodeficiencies are a reservoir of Poliovirus and a risk to Polio eradication
Asghar Aghamohammadi, Hassan Abolhassani, Jessica Quinn, Fred Modell, Vicki Modell, The JMF Centers Network Investigators and Study Collaborators, et al.
Frontiers in Immunology, June 2017
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
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
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 research. 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
Jeffrey Modell Foundation Global PI Village™
© 2014 Jeffrey Modell Foundation All rights reserved.