We couldn’t let Jeffrey’s life be in vain; we knew we had to Do Something in celebration of his life, to give life. In the spirit of his optimism and courage, we created the Jeffrey Modell Foundation in 1987.
But who had ever heard of Primary Immunodeficiency? To meet the rising need for education and public awareness for PI, we established the Jeffrey Modell Centers Network, which continue to expand year after year. We have witnessed more scientific discoveries and developments than we could have ever imagined over the past twenty years of the network’s global operation!
At the time of our first JMCN publication in 2011, our network consisted of 490 physicians at 100 centers in 64 countries across 6 continents, and 79,764 patients were being followed. Today, the JMCN includes 918 physicians at 405 academic institutions in 320 cities and 87 countries, spanning across 6 continents. Even more remarkably, the number of patients being followed in our database has surpassed 285,000! We are changing the future of PI, even if it’s just one patient at a time.
The substantial growth and meaningful work we've seen is made possible by the JMCN physicians and researchers who are devoted to our PI community around the world. Through education, public awareness, networking, newborn screening, and genetic sequencing, we’ve been able to help children and adults living with PI across 6 continents for thirty-five years. Some of these patients may have gone undiagnosed without the tremendous support of the JMCN members who work tirelessly for their patients. Without proper and earliest possible diagnosis, many patients would otherwise experience a lifetime of chronic illness, permanent organ damage, or even death. We couldn’t save our beloved Jeffrey because science hadn’t caught up to him, but it’s our earnest hope that we may continue to help or save the next Jeffrey through our global network of experts.
Knowing that we are Doing Something to change the lives and futures of PI patients for the better is the driving force behind our work. We’ve heard from researchers and physicians from across the globe, from Africa to Greece, from Brazil to Sweden, and beyond in support of our most recent publishing.
Read our most recent publication and learn more about our global NBS efforts.