Navigating PI

Back to school with Primary Immunodeficiency can be challenging, but we’re here to help! Read below for this month's #WeArePI tips, in collaboration with the Immune Deficiency Foundation, about how...

Your prescription isn’t covered. Now what?Don’t panic. The process can be time-consuming and challenging, but there are steps you can take with your doctor and insurance compan...

Subcutaneous Immunoglobulin (SCIG) therapy is a form of treatment for certain Primary Immunodeficiencies...

We're back with another edition of JMF Defined! Today we’ll be defining a type of Primary Immunodeficiency,

JMF Defined - Rare Disease

February 13, 2024

In honor of Rare Disease Week this month, our next edition of JMF Defined explains what a RARE DISEASE is.A RARE DISEASE is a disease that affects a small percentage of the population...

To our Primary Immunodeficiency community:Thank you for sharing your wonderful messages, memories, and heartwarming comments about our late Co-Founder, Vicki Modell. To know that...

Welcome to the next edition of JMF Defined! Today we’ll be defining the word IMMUNOLOGY.IMMUNOLOGY is the study of the immune system, which is our body’s main defense from germs, infe...

We created a brand-new word search all about Newborn Screening to help kids learn and have fun in the process! You can even print out a copy to share with your friends. Can you find these words?

Ronnie was born on Mary 9, 2017 in California. After Ronnie and his parents were discharged from the hospital, they received a call from his physician sharing that he has tested positive for Severe...

Newborn screening saves lives—it’s that simple. By the end of 2023, nearly 42 million newborns will have been screened in the United States alone. Imagine what this number could be...

Did you know that newborn screening is one of the most successful public health programs worldwide? According to the Centers for Disease Control and Prevention (CDC), more than ...

For our next edition of JMF Defined, we're sharing a detailed description of “NEWBORN SCREENING.” Newborn Screening Awareness month begins later this week!

Today we're pleased to share our most recent Q&A about attendee experiences at global immunology meetings. Education is an essential part of our mission, and we are honored to provide grants th...

We know that so many of you are getting ready to head back to school, so now is a great time to stock up on your JMF merchandise!All of the proceeds from our

Exercise, Diet, and Our Immune System

August 17, 2023

We’re back with a new edition of JMF Defined! Today we’ll be defining a form of treatment called a “BONE MARROW TRANSPLANT.”A BONE MARROW TRANSPLANT ...

In June, several of our JMF Center Directors came together at the inaugural JMF Symposium at Universidad del Desarrollo in Chile to present and discuss the latest knowledge and research about Prima...

We know that planning ahead is often necessary due to the unpredictable nature of Primary Immunodeficiency, so we created a checklist to help you and your child prepare...

We’re delighted to share our newest interview about attendee experiences at global immunology meetings. We are honored to provide grants to support travel to essential immunology conferences as par...

Did you know that early diagnosis saves the United States healthcare system $97,488* per patient? Not only does early diagnosis save lives and improve quality of life, but it also ...

We’re back with another issue of JMF Defined! Today we’ll be explaining one of our frequently used phrases, the “DIAGNOSTIC ODYSSEY.”The DIAGNOSTIC ODYSSEY&nb...

Welcome to the first edition of our new series JMF Defined! In this series, we’ll explain misunderstood and confusing medical terms so you can be better informed. In this first edition, we’l...

You’ve heard us talk about our no-cost genetic sequencing program, “Jeffrey’s Insights.” But what is genetic sequencing, and how does it impact the quality of life for patients living with P...

Today we’re sharing some ideas of how to pass the time during infusion. Ig infusions are made from donated plasma that contains lifesaving antibodies so that people living with Primary Immunod...

Today is World Blood Donor Day! This year’s theme is Give blood, give plasma, share life, share often. We urge everyone who meets the donor criteria to donate bloo...

We know that sometimes extra planning is required for children and families living with PI due to its unpredictable nature. To help you plan for different activities, we created a checklist of info...

Your Family Doctor is the first physician you see from a young age, and they are on the first line of defense in recognizing repeated infections. It’s essential that Family Doctors are familiar wit...

Want to learn more about Primary Immunodeficiency in a fun and interesting format? Check out the Funny Immunology book series written by several of our expert physicians! The books are

In honor of International Day of Families, we’re sharing our tips for finding caregiver resources. We know that being a caregiver, whether for a child or adult, can be overwhelming at times. It’s i...

Did you know that we have an entire section of our website dedicated to activities for kids? As a patient support organization, it’s a...

As WPIW 2023 comes to a close, we’d like to take this opportunity to share thanks to all of you, our global community of patients, families, physicians, nurses, and so many more, for your constant ...

In honor or WPIW, we wanted to highlight one of our JMCN physicians who has helped newborn screening for SCID become a reality in new regions of the world. Our global PI community is supported by s...

In honor of WPIW this year, we created the JMF regional toolkits to streamline the diagnostic odyssey. It’s our goal to reduce the burden that so many patients and families experience by providing ...

As we prepare for WPIW next week, we thought it would be helpful to share a refresher for new visitors and followers who might not know what Primary Immunodeficiency (PI) is. Primary Im...

Today is World Doctor’s Day, what a noble profession! We are proud to celebrate all doctors, but especially the doctors in our Jeffrey Modell Centers Network, who work tirelessly each day to improv...

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 Primary Immunodefi...

Tomorrow is Rare Disease Day, the rarest day of the year! We hope you’ve enjoyed learning more about the rare disease community over the past few days. To round off the week, we want to share a few...

Did you know that it takes an average of 6-8 years for patients living with a rare disease to be properly diagnosed? We established the

JMF Patient Resources

February 8, 2023

An essential part of our mission is creating and disseminating useful educational materials that can be used by all physicians and researchers, nurses, residents, post-doctoral fellows, and other i...

Did you know that there are more than 450 unique Primary Immunodeficiency disorders that impact the immune system? Primary Immunodeficiency can be difficult to diagnose, which may result in a lengt...

To kick off the new year, we're pleased to share a new installment of our interview series about attendee experiences at global immunology meetings. Our

Newborn Screening Program Highlights

December 28, 2022

In 2019, we proudly 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 ...

Today is Giving Tuesday! We are proud to recognize the extraordinary efforts of our global community today, and every day. A wonderful way to do good this Giving Tuesday is to sign up to donate pla...

As we enter the season of giving, we are delighted to share that we’ve launched an online storefront to raise funds in support of our globa...

We are delighted to announce our newest Q&A series that will center on sharing attendee experiences at global immunology meetings with our community to emphasize the importance of international...

We created the World Immunodeficiency Network (WIN) in 2001 with the goal of providing support, encouragement, and funding opportunities to national and international patient organizations, physici...

Today, we'd like to introduce you to one of our Associate Directors of Marketing and Communications, Stephanie, in the newest installment of our "Get to Know JMF" series.Why did you ...

It’s day four of International Plasma Awareness Week! Today we are sharing some helpful ideas for how to prepare for your plasma infusion (Ig therapy).Before your treatment begins, you’ll me...

Today would have been Jeffrey’s 52nd birthday. He came into our lives very wanted and very cherished. How could we know that he would only be with us for 15 years? In honor of his life, legacy, cou...

Since 1987, the mission of the Foundation has been earliest possible diagnosis. Primary Immunodeficiency is a genetic condition that is chronic, serious, and sometimes life-threatening if not detec...

This Newborn Screening Awareness month, we are highlighting key physicians who have helped newborn screening for SCID become a reality across the globe....

As parents, we are all too familiar with the uncertainty that comes with a Primary Immunodeficiency diagnosis. There was limited medical knowledge when Jeffrey was diagnosed with hypogammaglobuline...

Did you know that six in ten American adults have a chronic disease? Chronic diseases are more common than you might think, particularly invisible diseases like Primary Immunodeficiency.A ch...

On the outside, Jeffrey was so beautiful and looked so normal. But inside, his immune system, his lifeline, was seriously flawed.Primary Immunodeficiency is known as an invisible illness—mos...

When Jeffrey experienced the recurring infections typical of Primary Immunodeficiency, there were so many lonely nights in the hospital. It was heartbreaking to hear our child ask us to Do Somet...

When Jeffrey was around ten years old, he was started on intravenous gamma globulin (IVIg) therapy to replace the missing antibodies his body couldn’t produce. These treatments sometimes improved h...

We’ve heard time and time again from our community that people say, “you don’t look sick.” We are committed to sharing Jeffrey’s story with the world to encourage earliest possible diagnosis, and u...

Not all Primary Immunodeficiencies can be treated in the same way. Today, we’re continuing our treatment overview series by explaining how antibiotics are used to manage and treat ...

Jeffrey sent us out alone on our journey in 1987, and since then, we have circled the globe. However, there is one constant no matter where we are: children and adults suffering from chronic, recur...

When we learned about Jeffrey’s hypogammaglobulinemia diagnosis, there were so many anxieties caused by limited medical knowledge at that time. We had everything and lost everything at the same tim...

For seven long years, we lobbied in Washington to have SCID added to the Newborn Screening panel. Without diagnosis, life expectancy for SCID patients is only one year. There was an inexpensive and...

The Jeffrey Modell Foundation created the “10 Warning Signs of Primary Immunodeficiency” along with the American Red Cross and the JMF Medical Advisory Board to continue its mission to assure earli...

We never could have imagined all of the scientific discoveries and miracles over the past thirty-five years. While Jeffrey struggled with his condition, we never met another family and Jeffrey neve...

Today is World Blood Donor Day! This year’s theme is “Donating blood is an act of solidarity. Join the effort and save lives.” We urge everyone who meets the donor criteria to join us in ans...

The Jeffrey Modell Foundation created the 4 Stages of Testing Poster in the 1990s to assist physicians in making a Primary Immunodeficiency diagnosis. The poster has been translated into more th...

After Jeffrey was diagnosed, we travelled all over the world to get answers—Jeffrey could have anything he wanted, but we couldn't give him his health. He underwent some of the most innovative trea...

After Jeffrey’s diagnosis, we saw hepatologists, hematologists, immunologists, rheumatologists, oncologists, and just about every other “ologist” that exists. At the time, there was no support or i...

Finding new ways for us to follow Jeffrey’s wishes asking us to “Do Something!” is central to our mission and guides our work each and every day. Because of Jeffrey, we were able to establish the “...

We’ve shared the story of Jeffrey’s treatment before: first the painful, intramuscular injections of gamma globulin that left him sore for days, followed by the intravenous gamma globulin (IVIG) th...

Celebrating the People and Things We’re Thankful for in the JMF Appreciation GardenWhile the past several months have been challenging, we are so grateful to witness the ama...

Some patients with a Primary Immunodeficiency diagnosis may have a known gene defect, while others who have a Primary Immunodeficiency diagnosis may have an unidentified gene defect.Today, t...

There has been a lot of conversations surrounding the re-emergence of physician “house calls.”What does this mean for those affected by Primary Immunodeficiency? It could be very, very helpf...

At the Jeffrey Modell Foundation, one of our greatest ambitions is to celebrate our limitless potential... to show that we're unstoppable... and we always aim to do this in a positive and cheerful ...

Advocacy can mean different things to different people.People all over the world are showing their loyalty and contributing towards causes that are meaningful to them, and then passing along...

The beginning of the Foundation’s story starts with Jeffrey asking us to “Do Something!”You’ve heard our mission before, “to dedicate our efforts to early diagnosis, meaningful treatmen...

When Fred and I decided to establish Jeffrey’s Foundation, we knew it was both a grand idea and a challenge.  We had never met anyone else with Primary Immunodeficiency and the knowledge, supp...

We all remember going to the School Nurse as a child, whether we had a tummy ache or looking for a lollipop.However, let us not forget the vital role of a School Nurse.  School ...

Name:  Ridha BarboucheWhen did you start working with the JMF?  Since 2008 at a symposium entitled ‘’PIDs beyond Europe’’ during the ESID meeting ...

The beginning of a new year is upon us, and as always, it’s a time of reflection… where have we been, where are we now, and where are we going..?2014 has been a remarkably successful year fo...

Name: Jo Ann FortunatoWhen did you join JMF? June 15, 2002Role: Chief Financial Officer. I am responsible for the day...

For the last 27 years, JMF has advocated for Primary Immunodeficiency and accomplished so much to be proud of, mandatory NBS in several US states, discovering new genes, building centers around the...

Some people think of a community in its physical sense, that it is proximity that defines it. However, I like to believe that community is more about how close your heart is to something.The...

I have long been driven and motivated by my son Jeffrey’s, request to “Do Something!” and JMF was created with the intention to do so.Part of our effort to help cure Primary Immunodeficiency...

For patients living with certain Primary Immunodeficiencies, a bone marrow transplant may be the appropriate solution for treatment.  A bone marrow transplant is often suggested for some of th...

Our global network is made up of hundreds of expert researchers and physicians who work tirelessly to find better treatments and possible cures for PI. Did you know that there are two Jeffrey Model...

Are you looking for a place to connect and share with other patients, families, or physicians? We are proud to share global Primary Immunodeficiency

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