The Health Blog

The world of Jeffrey Modell, the son of Fred and Vicki Modell, in 1987 was a far different world than we have today for patients with genetic Primary Immunodeficiency (PI) disorders and diseases. There were few answers, little hope and no support networks. Jeffrey and his family had nowhere to turn to get answers; no one with whom to talk and not even enough pediatricians with any real clinical experience, with these life threatening disorders. The thing is that no one really knew what a primary immunodeficiency was or how to make a precise diagnosis. They didn’t know how many different kinds of primary immunodeficiencies there were or could even imagine a world with 150 different genetic defects on over 100 genes, but there are at least that many already classified by the World Health Organization (WHO).

Primary immunodeficiencies are a broad spectrum of problems with the immune system and not just one disease. These underlying genetic Primary immunodeficiencies ,of the immune system, affect all organ systems and are as varied as there are disorders and diseases, but they all had one thing in common; they were caused by genetic defects either inherited or as a result of the in utero environment; genes replicating in the wrong way before a child was born. Primary immunodeficiencies are congenital; you can’t catch them or become infected by them; you are simply born that way.

Jeffrey did not know any other child with primary immunodeficiency with whom he could talk. No one with whom he could share his thoughts and feelings, fear and despair at why he was sick so many times and so severely. Why was he different than other boys and girls his age? When would he ever get well enough to be able to plan on and actually take a trip or go on an outing without worrying that he would get sick and wouldn’t be able to go. Why couldn’t his parents give him the answers, or the doctors he constantly saw? What was really wrong with him? There
were lots and lots of children and adults with primary immunodeficiencies, to be sure, but there just wasn’t much information or awareness of what they were, how to diagnose or treat them, much less offer any hope of a cure. The thing is that Jeffrey did not look sick; he looked fine, even great! But when he got sick it was more often, of longer duration and more severe than other kids his age.

Jeffrey’s illness was hard on his family as well. A parent’s worse fear is that their child will get sick and they won’t be able to help them. The Modells tried everything, went everywhere and took Jeffrey to the best doctors at the best centers in the United States, but they all shook their heads and couldn’t help Jeffrey get better. His infections kept coming back and each time they got worse. Jeffrey died at age 15 of pneumonia, due to his underlying genetic primary immunodeficiency disorder. But before he died, in 1987, he asked his parents to please do something so that other children wouldn’t have to suffer with PI or their parents suffer the loss of a child.

In 1987, the Modells created the Jeffrey Modell Foundation in Jeffrey’s memory and to keep their promise to him. Since that time, thousands of children and adults have had a chance at a better life and even life itself as a result of the JMF and the important work that it supports all over the world. Little did the Modells realize, at that time, more than twenty years ago, that Jeffrey’s illness would be turned into hope and health, and even promise of cures, for so many people born with these genetic defects which today affect an estimated 1,000,000 children and adults in the United States and another 10,000,000 worldwide.

As technology improves and physician education and public awareness increases we may find that the actual numbers of people affected by PI might be much higher once more people become aware of the 10 Warning Signs of PI and their doctors apply the physician’s algorithm when PI is suspected. Primary immunodeficiency is like a new car with holes in its engine; many things can and will go wrong and then one day it will just stop. Don’t let that happen to you or someone you love; spread the word about PI and help us support the goals of early precise diagnosis, meaningful treatment and eventual cures of these debilitating and deadly diseases.

Vicki and Fred Modell established the Jeffrey Modell Foundation (JMF) in 1987, in memory of their son, Jeffrey, who died from complications of Primary Immunodeficiency at the age of 15. JMF is a multi-faceted global nonprofit foundation devoted to the early and precise diagnosis, meaningful treatments, and ultimately cures of PI, and is focused on physician education, public awareness, and clinical and basic research to better understand and treat these immunodeficiencies.

The JMF functions as a national and international source for the dissemination of information and education into the diagnosis and treatment of genetic immunodeficiencies. It advocates on behalf of patients and families to assure access to excellent and comprehensive care, promotes
awareness of Primary Immunodeficiency diseases through programs involving lay, scientific, and medical communities, and addresses quality of life concerns for patients with Primary Immunodeficiency (PI). The activities that are conducted to achieve awareness consist of CME symposia and workshops, support for research and training, and the provision of diagnostic, clinical, and educational services. The Foundation supports a 24-hour-a-day national hotline, and a comprehensive website which offers information and referrals to immunologists at major medical centers around the world.

To date, there are 35 Jeffrey Modell Research and Diagnostic Centers in the U.S., Canada, Europe, Middle East, and Asia. Recently they established collaboration with the NIH and Affymetrix to develop a Gene Chip using Microarray technology to do Newborn Screening of Severe Combined Immune Deficiency. The Modells have raised over $40 million for research and education since starting the Foundation in 1987.

Mission

The Jeffrey Modell Foundation (JMF) was established by Vicki and Fred Modell in memory of their son, Jeffrey, who died at the age of 15 of a Primary Immunodeficiency (PI). The Foundation is dedicated to early and precise diagnosis, meaningful treatments and ultimately cures for
Primary Immunodeficiencies.

What you need to know:

PI is a genetic defect in a child’s immune system. It’s more common than you think, it’s chronic, and if untreated, it can be deadly.

It affects as many as 1 million children and young adults; more common than childhood leukemia and lymphoma combined.

PI causes the usual childhood illnesses to occur an unusual amount of times.

There are 10 warning signs of the disease, and a simple and inexpensive blood test can identify the disorder in over 95% of the cases.

Once diagnosed, there are several treatment options that can provide a good quality of life and in some cases, even a cure.

Focus

- To affirm its absolute commitments to clinical and basic research in order to better understand and treat Primary Immunodeficiencies.

- To serve as a national and international source for the dissemination of information and education into the diagnosis and treatment of genetic immunodeficiencies.

- To serve as a tireless, compassionate advocate on behalf of patients and families to assure their access to excellent and comprehensive care.

- To promote public awareness of the Primary Immunodeficiency diseases through programs involving our lawmakers as well as lay, scientific, and medical communities.

- To affirm its commitment to turn pain, despair and suffering of immunodeficient children and adults into comfort and hope.

Contact Information:
Jeffrey Modell Foundation
747 Third Avenue, 34th Floor
New York, NY 10017
Phone: (212) 819-0200
Fax: (212) 764-4180
Website: www.info4pi.org
E-mail: info@jmfworld.org
PR Press Contact: Natalie Maniscalco 212.580.0835
natalie@rcourihaycpr.com