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Our Story

Jeffrey Asked Us to “Do Something!”

statue-JMCN.svg On September 25th, 1970 our only son, Jeffrey, was born. He came into our lives very wanted and very cherished. How could we know that he would only be with us for 15 years? Or how he would change our lives forever, along with the lives of thousands of people he would never meet?

Jeffrey’s first ten months were peaceful and happy. He plunged into life with joy and quickly developed the cheerful, outgoing personality that everyone remembers about him.

But then things started to go very, very wrong. Just before his first birthday, Jeffrey developed a hepatitis-like condition and was hospitalized with high fevers, jaundice, and an enlarged spleen. The doctors ordered extensive tests. There was an unbearable wait, and then the diagnosis, hypogammaglobulinemia.

In an instant, our world was shattered. On the outside, Jeffrey was so beautiful and looked so normal. But inside, his immune system, his lifeline, was seriously flawed. The doctors explained the medical aspects of his illness and told us the prognosis for his condition was uncertain.

This alone would have thrown our lives into turmoil. But there were the added anxieties caused by limited medical knowledge at that time. After all, who had ever heard of Primary Immunodeficiency? What were the causes? What effects would it have on Jeffrey and our family? How could we explain to him, a child, why he kept getting ill? We could barely understand it ourselves. We sought the best medical opinions and he had the best medical care, but science had not caught up to Jeffrey.

And the lack of knowledge was only part of the problem. In the whole time Jeffrey was ill, we never met another family and he never met another child living with Primary Immunodeficiency. Not one! Virtually every other illness had support and information networks that anyone could access. Primary Immunodeficiency had none. 

And so life went on. Jeffrey had the recurring infections typical of Primary Immunodeficiency, and our lives became a whirlwind of hospitals and doctors’ offices. We saw hepatologists, hematologists, immunologists, rheumatologists, oncologists, and just about every other “ologist” that exists. Every succeeding illness disrupted his young life. There were so many lonely nights in the hospital and so many lonely days when he was sick at home.

There were some treatments available, but they brought problems of their own. At three or four years of age, Jeffrey had to endure painful, intramuscular injections of gamma globulin given with huge needles that left him sore for days. By the time he was ten or eleven, he was started on intravenous gamma globulin and his first treatment was given to him by Dr. Max Cooper in Birmingham, Alabama. He was then enrolled into the first clinical trial for IVIG at Memorial Sloan Kettering, in the care of Dr. Robert Good. These treatments sometimes improved his life for weeks at a time. But time will never erase the memories of the infusions with their many side effects, including chills, fever, headaches, and nausea.

Through it all, Jeffrey managed to thrive. He reached normal height and weight and kept up in school, camp, and sports. But throughout the years, Jeffrey’s problems never went away.

Courage and humor were Jeffrey’s great assets. His determination was inspiring. But the time bomb kept ticking inside him. One story sums up this whole middle part of his short life. 

One day, Jeffrey came home from school with a permission slip, bubbling with excitement. His 8th-grade class was planning a 3-day “whaling expedition” on Cape Cod in April. Jeffrey told us to “just sign the slip,” that he desperately wanted to go, that it meant everything in the world to him. He was old enough and smart enough to know what the consequences might be, but he said: “it was worth it”.

I could only imagine how cold and damp it is on Cape Cod in April – the rustic, unheated cabins they would sleep in, the wet clothing from the whaling boat. I knew I would not have control of what he wore, or if he would be careful. After all, he was a teenager and wanted to be just like the rest of his friends.

 Fred and I carefully weighed the pros and cons. We knew he loved the sea, boating, and being with his friends. With great trepidation, we signed the permission slip and crossed our fingers. I thought about asking the pediatrician his opinion, but I knew what he’d say, so I didn’t. Off Jeffrey went.

Jeffrey called home several times to say he was having fun and feeling great. He was obviously the greatest actor of all time – an Oscar-winning role. Three days later, the bus rolled in and he came off laughing and excited, dirty and grimy, with bright blue eyes and shiny red cheeks. I knew those cheeks were a tell-tale sign of fever. Sure enough – 104˚.

That trip, those three or four days, were the most memorable, enjoyable, fulfilling days of his life; something he could share with his friends. Several of the kids landed up with a cold, but Jeffrey landed up in the hospital. He told the nurses and doctors, who had come to be his best friends, about his trip – the whale sightings, the girls. He laughed off the fact that he was now paying for it.

Jeffrey survived and bounced back. But his doctors, who compared him to a cat with nine lives, told us he had already used up seven or eight. One day, without warning, he developed hepatitis, and a few months later, pneumocystis pneumonia. He had two more life-threatening bouts with pneumocystis, and the third one, sadly, took his precious life in 1986. 

Throughout his life, Jeffrey would say to us, “Do Something! You went to college. You’re smart!” And to his doctors, he would say, “Do Something. You’re smart. You went to medical school!” How heartbreaking it was to hear your child say that. Little did he know, his doctors and his parents did everything they could, but sadly, science had not caught up to Jeffrey. 

When he died, he took with him our fear, our dread, our loneliness, our despair. But we could not let his life be in vain. We had to “Do Something” to fulfill his unanswered prayers.

Jeffrey never knew how he would change our lives forever, and the lives of so many thousands of children he would never meet. But in the spirit of his optimism and courage, we created the Jeffrey Modell Foundation - not in memory of his death, but in celebration of his life, and to give life.

Throughout his lifetime, we were privileged to have consulted with four of the most important immunologists of the 20th century…Max Cooper, Bob Good, Fred Rosen, and Walter Hitzig. Each of them spent countless hours, days, and weeks trying to unravel the mysteries of Jeffrey’s condition. We and Jeffrey were so fortunate to have met the most preeminent immunologists of the time - each of whom made a profound impact upon the diagnosis, treatment, and understanding of Primary Immunodeficiency – each of whom contributed to keeping Jeffrey alive for fifteen years. And when we thought about establishing the Jeffrey Modell Foundation those four giants, together with their colleagues, set an agenda for this new entity that has carried us to this day.

The Jeffrey Modell Foundation is a public charity 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.

Our first project, in the early 1990’s, was to develop the “10 Warning Signs of Primary Immunodeficiency” with the American Red Cross and our newly established Medical Advisory Board. Since then, the “10 Warning Signs” have been translated into more than 50 languages and have been distributed throughout the world. In 2010, the Warning Signs were slightly revised, as the medical community developed greater knowledge of Primary Immunodeficiencies.

To date, we have named and funded 150 Jeffrey Modell Diagnostic and Research Centers, and today, the Jeffrey Modell Centers Network includes 821 Expert Physicians, at 379 academic teaching hospitals, serving 294 cities, 86 countries, and spanning 6 continents. Remarkably, more than one hundred new genes have been discovered at Jeffrey Modell Centers in the past five years.

The Jeffrey Modell Foundation has organized more than fifty scientific symposia including global meetings in collaboration with World Health Organization (WHO) and International Union of Immunological Societies (IUIS) in Austria, England, France, Germany, Greece, Hungary, Ireland, Portugal, Switzerland, California, New York, and Wyoming.

The Foundation has partnered with government agencies, including a multimillion-dollar research collaboration with the National Institutes of Health. JMF has collaborated with the U.S. Centers for Disease Control and Prevention to conduct a Public Awareness and Physician Education Program, which has resulted in a tenfold increase in the number of patients identified, referred, diagnosed, and treated. Public Service Advertising appears on TV, radio, airports, newsstands, bus shelters, shopping malls, magazines, Taxi TV, and even large billboards in Times Square. Donated media has reached over $690 Million.

Patients worldwide are supported by JMF with Kids Days and through our World Immunodeficiency Network (WIN); Physicians and Nurses receive travel grant support to attend important conferences and meetings through winMD and winRN.

Over the past decade, we have appeared at the United States Congress to advocate for Newborn Screening for SCID. In 2010, the U.S. Secretary of Health and Human Services recommended SCID to the National Core Panel, the first condition to be added in the last twelve years. JMF implemented and funded programs to screen for SCID in many states. Hundreds of newborn babies with life-threatening conditions have been screened, diagnosed, transplanted, and cured!

To date, the Foundation has funded twenty-eight post-doctoral fellowships and four Jeffrey Modell Endowed Chairs in Pediatric Immunology Research. In addition, in 2007 the Jeffrey Modell Immunology Center was established at Harvard Medical School.

Over the past few years, the Bill & Melinda Gates Foundation and the Jeffrey Modell Foundation have collaborated to eradicate polio worldwide.

More than thirty years after its creation, the Jeffrey Modell Foundation continues its mission of hope, advocacy, and action by vigorously supporting physicians, researchers, and the ever-expanding global patient community - directing its efforts toward early diagnosis, meaningful treatments, equal access to care, and ultimately, cures for Primary Immunodeficiency. During our journey, we have had the privilege of working alongside many courageous and inspiring individuals, who have also created patient advocacy organizations in honor of or in memory of a child…specifically, the Immune Deficiency Foundation (IDF), SCID Angels for Life, Wiskott-Aldrich Foundation (WAS), Chronic Granulomatous Disease Foundation (CGD), the International Patient Organization for Primary Immunodeficiency (IPOPI), as well as all of the other dedicated patient organizations throughout the world. Together and united, we have shaped one strong message and one strong voice that will resonate for generations to come.

As we look back it was Jeffrey who created the passion for our work. In a small way, we hope we have been facilitators and perhaps the “glue” for advancing science and health policy in all regions of the world.

By supporting scientific forums, by funding research, by supporting professors and researchers, by providing funds that enable the best and brightest to choose immunology as a life-long career, we hope to have been a critical catalyst for the increased pace of scientific discovery, and we hope that we have influenced and caused positive change for health policy around the world. Whether it’s funding for Newborn Screening or support for pediatric immunology, we have advocated before health departments and health ministries across the continents.

fred-and-vicki-modell-daily-news.jpg We have seen great success throughout the course of our journey, but we still have miles to go. None of our success could have happened without the brilliance and compassion of the doctors, the tender, loving expert care of the nurses, the resolve and dedication of the researchers, the bravery and courage of the families, the vision and constant support of our donors, the perseverance of the quiet, unsung heroes working days and nights in their labs, and most of all, the patients who inspire us, propel us, and compel us to continue our incredible journey.

We believe that all of us together - we can, we will, and we are - making a difference. We can meet the challenges, capture the opportunities, and give all children for generations to come a brighter, healthier future.

Yes, Jeffrey, you set us on our journey alone, but indeed we are “Doing Something”.

You taught us that to succeed in life you need three things: a wishbone, a backbone, and a funny bone. The wishbone is for the ideals, the goals, and the dreams; the backbone is for the fortitude and the courage to pursue them, and the funny bone is for the laughter and tears that are necessary for the little bumps along the road.

We wish everyone a lifetime filled with more laughter than tears, as we all continue to pave new paths, brave new worlds, and walk new roads along this extraordinary journey…

Vicki’s Voice

Getting to know you, getting to know me. My inspiration, my words.

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, newborn screening and genetic sequencing.

jeffrey-modell-portrait.jpg

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

our-journey-JMF-collage.jpg

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 Primary Immunodeficiency.
  • Affirming our absolute commitment to clinical and basic research in order to better understand and treat Primary Immunodeficiency.
  • 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 Primary Immunodeficiency 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:

  • 900 Expert Physicians at 386 research, diagnostic and referral centers, in 307 cities, 86 countries, spanning 6 continents and always growing.
  • 188,000+ patients with a Primary Immunodeficiency are being followed at Jeffrey Modell Centers

Translational Research Program

  • 14 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.Thirty-six grants have been awarded.

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.
  • Twenty-one 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 called for the Jeffrey Modell Foundation to conduct a surveillance study of immunodeficient patients to identify poliovirus excreters. The patients were recruited from 21 of our Centers in the Jeffrey Modell Centers Network.
  • The surveillance study was 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 Primary Immunodeficiency?... 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.

winRN ~ for nurses:

  • Looking for Primary Immunodeficiency?... 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 a lively dialogue with colleagues.

Jeffrey Modell Centers Summits ~ for physicians:

  • Organized and hosted the 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 Primary Immunodeficiency 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 Primary Immunodeficiency 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 30+ years.

Patient Support

World Immunodeficiency Network (WIN)

  • JMF’s WIN Program has awarded over 260 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 Primary Immunodeficiency 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 Primary Immunodeficiency” 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 Primary Immunodeficiency. 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, newsstands, bus shelters, shopping malls, magazines, Taxi TV, and even large billboards in Times Square. To date, this program has generated over $700 million in donated media.

People Magazine Cover

  • The “When I Grow Up” PSA's have been featured on the cover of PEOPLE Magazine in many 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. The program runs annually.

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:

  • 50 states, the District of Columbia, Puerto Rico, and the Navajo Nation are currently screening, reaching a total of 3,968,667 newborns screened per year.
  • 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

  • Over thirty years of advocacy for Primary Immunodeficiency 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 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 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.
  • A Call To Action... A Global Resolution – The Jeffrey Modell Foundation celebrated its 30th Birthday in June with a four-day Global Summit in Los Angeles, California.  More than 275 world-renowned Immunologists and scientists from 52 countries gathered to share their research, as well as, their expertise in the diagnosis, treatment, and management of Primary Immunodeficiencies. At the conclusion of the Summit, a Call to Action… a Global Resolution, was drafted and has been signed by hundreds of physician experts.
  • 2020 Global Resolution – Over 300 international expert immunologists pledged to continue encouragement and support of physician education and public awareness relating to all Primary Immunodeficiencies to physicians, health officials and the public.  Signees renewed their support improved access to care, treatment, and diagnostics for patients, including the implementation of newborn screening for Severe Combined Immunodeficiency (SCID) and related T cell Lymphopenia.

Permanent Endowments

  • Jeffrey Modell Immunology Center at Harvard Medical School
  • Endowed Chairs at:
    • Children’s Hospital Seattle, Washington
    • Children’s Hospital of Philadelphia, Pennsylvania
  • Endowed Fellowship Program at:
    • Children’s Hospital Seattle, Washington
    • Mount Sinai School of Medicine, New York
  • Endowed Immunology Prize at:
    • Harvard Medical School, Massachusetts
    • Mount Sinai School of Medicine, New York
  • 28 Post-Doctoral Fellowships Granted Worldwide
  • 29 Jeffrey Modell Summer Scholars at Harvard Medical School and Rockefeller University

Publishing

  • Jeffrey’s insights: Jeffrey Modell Foundation’s global genetic sequencing pilot program to identify specific primary immunodeficiency defects to optimize disease management and treatment 
    Jessica Quinn, Vicki Modell, Jennifer Holle, Rebecca Truty,Swaroop Aradhya, Britt Johnson, Jordan S. Orange, Fred Modell 
    Immunologic Research,May 2020, Springer Science + Business Media
  • The case for severe combined immunodeficiency (SCID) and T cell lymphopenia newborn screening: saving lives… one at a time 
    Jessica Quinn, Jordan S. Orange, Vicki Modell, Fred Modell 
    Immunologic Research, March 2020, Springer Science + Business Media
  • Calculation of Primary Immunodeficiency "Risk Vital Sign" via Population-Wide Analysis of Claims Data to Aid in Clinical Decision Support 
    Nicholas Rider, Di Miao, Margaret Dodds, Vicki Modell,Fred Modell, Jessica Quinn,Heidi Schwarzwald, Jordan S. Orange 
    Frontiers in Pediatrics, March 2019
  • Global report on primary immunodeficiencies: 2018 update from the Jeffrey Modell Centers Network on disease classification, regional trends, treatment modalities, and physician reported outcomes 
    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 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

  • 2022: JMF received its 7th consecutive '4-Star Rating', the top honor from Charity Navigator (America's premier independent charity evaluator). "Only 10% of the charities we evaluate have received at least 7 consecutive 4-star evaluations, indicating that Jeffrey Modell Foundation outperforms most other charities in America."
  • 2020: JMF received its 5th consecutive '4-Star Rating', the top honor from Charity Navigator (America's premier independent charity evaluator) and was ranked #10 in the United States and #12 Globally of all charities dedicated to Health, Diseases, Disorders, and Disciplines
  • 2019: JMF received its 4th consecutive '4-Star Rating', the highest honor from Charity Navigator (America’s premier independent charity evaluator) "Attaining a 4-star rating verifies that Jeffrey Modell Foundation exceeds industry standards and outperforms most charities in your area of work. Only 18% of the charities we evaluate have received at least 4 consecutive 4-star evaluations."
  • 2018: JMF received its 3rd consecutive '4-Star Rating', the highest honor from Charity Navigator (America’s premier independent charity evaluator) "highest possible rating and indicates that your organization adheres to sector best practices and executes its mission in a financially efficient way."
  • 2017: JMF received its 2nd consecutive 4-star rating from Charity Navigator, America’s largest independent charity evaluator.  "This is the highest possible rating.  Of 1.5 million charities in the U.S., less than 1% receives the coveted 4 stars Charity Navigator designation."
  • 2017: JMF was selected as one of the five top charities in America dedicated to Health, Diseases, Disorders, and Disciplines, by Charity Navigator
  • 2017: JMF was contacted by an experienced, professional, award-winning film production team to produce a documentary.  The full-length film will highlight Jeffrey’s story and the unique accomplishments of the Jeffrey Modell Foundation.  It will be distributed globally in 2019.
  • 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."
  • 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.
  • 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

Donate

Help Support Our Programs

pennant.svg Jeffrey’s Foundation has been on a long and incredible journey for the last twenty-seven years. We have been so fortunate to have achieved many milestones and are privileged to have made a great difference in the precious lives of children who suffer from Primary Immunodeficiency. We are thankful for the many individuals who are dedicated to helping us on our journey, including you.

Your support and encouragement enable us to continue our mission – to provide comprehensive programs in research, physician education, patient support, public awareness, newborn screening and advocacy for millions of children and adults who valiantly struggle each day with Primary Immunodeficiency. With your help, meaningful treatments and cures are sure to follow, and our journey together will make a profound difference in so many precious lives.

To those who have supported our Programs in the past, and to those who have come to this page to support us today, we are forever grateful. We will not stop until our mission is complete!

Please know that you have the option to donate “in honor of” or “in memory of” if there’s someone special you’d like to recognize.

How to Donate

Your contribution and support is tax-deductible. Choose one of the following:

Online

You can contribute right now through the Network for Good link below:

piggy-bank.svg Send a donation form

You can mail, fax, or email your donation form. Simply fill one out and follow the instructions below.

Download the form

Mail to:
Jeffrey Modell Foundation
780 Third Avenue
New York, NY 10017
Fax: 212-764-4180

Email: info@jmfworld.org

JMF is a 501(c)3 nonprofit organization. All donations are tax-deductible according to the law. Donors will receive a letter of acknowledgment.

View the Jeffrey Modell Foundation Code of Ethics and Accountability and Transparency Policies, Board of Directors, and Audited Financials.

America’s Leading Independent Charity Evaluator
Awarded Jeffrey Modell Foundation its highest four star rating for the seventh consecutive year.
Of 10,000 organizations rated, Jeffrey Modell Foundation ranks #1 in Immunology worldwide.
Click here to view our 2022 4-Star Rating Certificate

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.
  • 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!