Patient Spotlights

This week is National Nurses Week! We're excited to highlight Diemmai, an infusion nurse, from our global Primary Immunodeficiency community.My love and res...

We are delighted to share our newest patient highlight featuring brothers Maverick and AJ! Both boys were diagnosed with XLA soon after they were born, and now receive w...

On September 5, 2024, Etta was born in New York, the youngest of three sisters in a military family. Her parents had no family history of immune disorders, and like so m...

Jakob is an active-duty U.S. Navy sailor and was recently diagnosed with Common Variable Immunodeficiency (CVID). After recurring infections turned into serious complica...

After 17 years of uncertainty, Sara was diagnosed with CVID/SPAD. Since then, she’s turned her diagnosis into a mission to raise awareness, create connection, and give o...

After 12 years of unanswered questions, countless infections, and worsening lung function, Kathryn finally found clarity with a diagnosis of Common Variable Immune Defic...

Meet Evangelia, who was diagnosed with Common Variable Immunodeficiency (CVID) after her mom’s test results led to a deeper family investigation. Despite challenges, Eva...

Text by Jodi Taub, LCSW, PLLC – Patient and Expert in Primary ImmunodeficiencyAs we celebrate World Primary Immunodeficiency We...

Lydia is vibrant 10-year-old whose life was completely transformed after being diagnosed with Common Variable Immunodeficiency in early 202...

Christina's journey with Common Variable Immunodeficiency (CVID) led her from patient to lifesaving nurse. Her story is a powerful reminder that while PI may change the...

Meet Kerry! After years of being chronically sick, Kerry’s rheumatologist noticed something wasn’t right. That...

Every day is a victory for Christian, who was diagnosed with XLA at age 3. Christian is now 6, and embraces life with resilience and hope! H...

Meet Murilo, a passionate advocate living with Common Variable Immunodeficiency (CVID). Murilo was diagnosed in August 2023 after battling recurrent infections and has f...

We are thrilled to share our newest patient spotlight story, featuring Andy! Andy was born in Mexico City with ...

This month's patient highlight features Sam, who was diagnosed with Common Variable Immunodeficiency (CVID) two years after her father passed away. Now, Sam manages her ...

For decades, Dr. Jennifer Puck, a professor of pediatrics at UCSF, has been a leading advocate for universal newborn screening to identify Severe Combined Immunodeficiency (SCID). Children with SCI...

Meet Dawson, the FIRST newborn in the United States to be diagnosed with Severe Co...

This month’s patient highlight features Aubrey, a college student living with CVID. After being diagnosed at age 19 due to extreme sickness during ...

We're delighted to share our newest patient spotlight with Nicole! Nicole was diagnosed with CVID in her late thirties, and has since used her ...

We are thrilled to share our new spotlight interview in honor of Mental Health Awareness Month. Jodi is a CVID patient and therapist who has dedicated her work to helping others with PI manage thei...

We are thrilled to share an interview with our WINMD recipient, Lorenzo Erra, a doctoral scholar at the Universidad de Buenos Aires in Argentina. Read on to learn more a...

We're thrilled to share our new patient spotlight interview with Audrey and her mother Alyssa! Audrey is 10 years old and was diagnosed with Hypogammaglobulinemia after being sick all too often whe...

We are delighted to share our most recent patient spotlight with Wendy, who lives with CVID and is a professional handcyclist and coach! Wendy was one of the first PI patients to start receivi...

In honor of National Patient Recognition Week, we’re delighted to share our next patient spotlight ...

We’re pleased to share our next patient spotlight interview with Helen, who was diagnosed with CVID...

We are delighted to share our newest patient Q&A with Amy, a Primary Immunodeficiency warrior. ...

Earlier this month we introduced our new When I Grow Up character who wants to be a director, and we also welcomed back our Teacher and Dancer who ARE growing up. Thanks to the 10 Warning Si...

As we continue celebrating the launch of our new PSA campaign, we are delighted to share our recent interview with our colleague and friend, Mitchell Stuart, Co-Founder of HQ Creative. We spoke wit...

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...

We're halfway through Newborn Screening Awareness month! Today, we're delighted to share Charlie's newborn screening story through an interview with his mother, Jennifer. C...

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...

One of our main goals when we started the Foundation was to encourage a network so that people living with PI would have a built-in community of friends. Our friends support us in good and bad time...

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’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...

For people living with a PI, plasma may be the difference between life and death. Donated plasma from healthy donors is used to create lifesaving treatments for people living with PI to help their ...

We are thrilled to share that Quebec has added SCID to its newborn screening panel, joining nine other provinces in their screening efforts to save more lives.  Read the announcement

Celebrating National Nursing Assistants Day

June 15, 2023

Today is International Nurses Day! We are proud and honored to celebrate our often-unsung heroes, our nurses. Their expert skills, comforting presence, love, and tenderness provide a sense of calm ...

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...

As we continue our WPIW awareness work this week, we are delighted to share our recent interview with Jennifer Randle, a mother of two who lives with her family in the United Kingdom. Jennifer's yo...

Today we are delighted to share our recent spotlight interview with Austin Stack. Austin was diagnosed with X-Linked Agammaglobulinemia (XLA) at the age of three, and is ...

We are proud to celebrate the 8th annual International Day of Women and Girls in Science (IDWGIS)! Please join us in honoring the extraordinary and brilliant women in our global communit...

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

Grateful for Our Community

November 23, 2022

Today we’re sharing the next installment of our interview series about attendee experiences at global immunology meetings. We are honored to provide grants to support travel to essential immunology...

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...

In honor of International Plasma Awareness Week, we are excited to share our recent interview with the Director of the Jeffrey Modell Diagnost...

In 2007, we agreed to fund half of a pilot program to screen for SCID in the state of Wisconsin. Dawson Bornheimer was the state’s first infant to test positive for a severe T cell deficiency throu...

We’re excited to share another installment of our physician interview series in honor of Newborn Screening Awareness month. Today, we’re sharing our recent conversation with Antonio Condino-Neto, M...

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

As we continue to spread awareness for Primary Immunodeficiency and newborn screening for SCID across the world, we are thrilled to share the news that earlier this year, the Australian government ...

Today we are delighted to share our recent spotlight interview with James Rukin. James was diagnosed with XLA as a young child and is now a thriving 14-year-old. James is a wonderful role model for...

July 2022 – One of the most fulfilling parts of our work at the Foundation is supporting patients and their families through our “Roots & Wings” program. Over the past several ...

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...

June 2022 – Our “Roots & Wings” program continues to take flight! By providing travel and support to families whose child has been identified with a potentially life-threatenin...

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 “...

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...

Vicki’s Voice: I have invited a special team member of the Jeffrey Modell Foundation to be a guest blogger on Vicki’s Voice. My inspiration, my words.Read her

Global PI Village "Spotlight" Series: Bethany Metzroth

August 13, 2022

Name: Michael KellerWhen did you start working with the JMF?  I first began working with the Jeffrey Modell Foundation after receiving a Translati...

Name: Pere Soler-Palacin, MD, PhD, MsCWhen did you start working with the JMF?  We started data sharing in 2007 and have been recognized as a...

On Saturday, September 19th, our friend and hero, Steve Bursley, will be embarking on his traditional “One Tough Ride”, dedicated to his son Nicholas who has Primary Immunodeficiency. 

Name: Jose R. RegueiroTell us about how you learned about JMF and World PI Week! I met Vicky and Fred many years ago in Geneva and have followed t...

Name:  Professor Andrew J Cant, BSc, MD, FRCP, FRCPCHTell us about how you learned about JMF and World PI Week!  The Royal Victoria Infirmary is o...

Name:  MARIA KANARIOUTell us about how you learned about JMF and World PI Week!“Member” of WHO and IUIS meetings for Primary Immunodeficien...

Name: Liliana BezrodnikTell us about how you learned about JMF and World PI Week! When I began to work with the LAGID members I received the infor...

Name: Ruth HerreraTell us about how you learned about JMF and World PI Week!  Ten years ago I started working for Dr. William T. Shearer as his ad...

Name: Grant Roberts GinsbergWhen did you join JMF? I joined JMF in July of 2014.Role: Senior Program Director. My role includes mark...

The Awe & Wonder of a Three Year Old Boy…Just recently we received a wonderful email surprise. Remember Jared? The young boy who was the first child to be approved through our “Roots &am...

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

Name: PJ Maglione, MD, PhDWhen did you start working with the JMF? I began working with the JMF at the start of Allergy/Immunology Fellowship at M...

Name:  Chaim M RoifmanWhen did you start working with the JMF? 1996Profession and Location: Director, Canadian Center...

Name: Juan Carlos AldaveWhen did you start working with the JMF?  On December 2011 I evaluated a 2-month-old girl with severe mucocutaneous candid...

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

Three Lessons the Modell’s Taught MeAfter being diagnosed with Primary Immune Deficiency at 6 months of age in 1991, my parents were uncertain about what the future had in s...

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...

On International Women’s Day, we are proud to celebrate the extraordinary accomplishments of our very own Vicki Modell, co-founder of the Jeffrey...