May 2026

News & Updates

May brought us together with patients, experts, and advocates from across the world to collaborate and celebrate milestones. The following Jeffrey Modell Foundation news, community highlights, and program updates demonstrate the important work happening every day to accelerate earliest possible diagnosis for every person living with Primary Immunodeficiency.

Last month we gathered with our partners and community at Virginia Tech to dedicate the first Jeffrey Modell Center for Informatics and Data Science. As a part of our global Jeffrey Modell Centers Networks (JMCN), this new center will focus on using data and emerging technologies like artificial intelligence to advance our mission of earliest possible diagnosis for Primary Immunodeficiency.

Thank you to everyone who participated in World Primary Immunodeficiency Week (WPIW) 2026! Every year WPIW amplifies the strength and resilience of the Primary Immunodeficiency community. In case you missed it, here are a few highlights from WPIW 2026:

Our global community joined together for a video to show the world that Together We Are Stronger Than PI.

We hosted our WPIW JMF Speaker Series, Mind The Gap! Primary Immunodeficiencies: A Continuously Evolving Story with Dr. Luigi Notarangelo (NIH).

We launched our updated and redesigned website! The new info4pi.org is a hub for PI education, resources, and support.

National Nurses Week

#WeArePI:

Community News & Updates

In May we celebrated National Nurses Week! Our latest community spotlight features Diemmai, an infusion nurse in Texas who supports patients with Primary Immunodeficiency.

Read About Diemmai

The Children's Hospital of Philadelphia will host their 8th Annual Immune Dysregulation Symposium on June 10.
Dawson, the first child diagnosed with SCID through newborn screening, was featured on WSAW-TV's student athlete spotlight.

This month the Jeffrey Modell Foundation team traveled to New Orleans for the Clinical Immunology Society (CIS) Annual Meeting, a gathering of physicians, scientists, advocates, and patients to share and engage with the latest advancements in clinical immunology. During the CIS Annual Meeting, our Scientific Director, Jessica Quinn, presented a poster highlighting findings from an upcoming publication on the Jeffrey's Insights genetic sequencing program.

While in New Orleans we hosted an in-person meeting of our Patient & Family Advisory Board (PFAB), which brings together patients and family members of patients with STAT1 GOF, STAT3 GOF, or JAK1 GOF to create education that better reflects and amplifies their experiences.