Jeffrey Modell Foundation

The Jeffrey Modell Foundation was established by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of pneumonia due to an underlying Primary Immunodeficiency (PI) disease. The Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of the ever increasing known PI Diseases. Our focus is: to affirm our absolute commitment to clinical and basic research in order to better understand and treat PI; 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 an advocate on behalf of patients and families to assure their access to excellent and comprehensive care; and to promote public awareness of the PI diseases through programs.

The Jeffrey Modell Foundation works tirelessly to create a world in which there are cures for PI by

Goal One: The main goal of JMF is earliest possible diagnosis. PI is a genetic condition that is chronic, serious, and often fatal; however, early diagnosis through global newborn screening helps to save lives.

Goal Two: JMF is dedicated to ensuring access to appropriate, meaningful treatments for PI. Our “Roots & Wings” program provides travel support for critically ill children requiring lifesaving treatment.

Goal Three: The goal of JMF is to support efforts to develop a cure for PI through basic and clinical research, physician education, public awareness and advocacy, so that all children enjoy a healthy future.

Despite the shift to remote work, the Foundation’s leadership continued to encourage skill development throughout the pandemic. JMF’s leadership utilized virtual platforms to attend medical and leadership conferences, speak at patient forums, and connect with patients and families. Annual board meetings shifted to virtual platforms as a way to maintain connection and share updates with members of the Foundation across the globe. These efforts to better communicate also enhanced the Jeffrey Modell Center Networks, in terms of center operations, patient visits, and the dissemination of information and timely safety updates to patients and families. Communicating with leaders across the Networks continues to encourage leadership development of site and center directors, young researchers and physicians, patient organizations, and advocacy partners.

At the onset of the pandemic, all staff and Foundation operations were immediately shifted to remote work until safety restrictions were lifted. The Foundation updated its national PSA campaign to encourage mask wearing in order to protect the public, especially the vulnerable community of individuals living with PI. The Foundation continued its advocacy efforts, attending conferences and trainings virtually, and participating in online patient forums. Throughout the pandemic, the JMCN continued to support individuals impacted by PI, working endlessly to care for patients who were unwell, vulnerable, and understandably, afraid. When staff returned to the office, all local safety protocols were taken into consideration and followed, including social distancing, staggering and reducing in-person hours, nightly office cleaning and increased sanitation efforts, and encouraging remote work when possible. Foundation operations continue to be flexible, shifting and changing as necessary based on ongoing external changes in the New York office as well as Centers in other countries.