You may have seen the Jeffery Modell Foundation’s name around town, literally, from their educational posters. I was thrilled to come across one in the Chicago O’Hare International Airport. The foundation has been spreading awareness and advocating for PI patients for years.

The nonprofit was founded in 1987 after 15 year old Jeffery tragically passed away from issues related to Primary Immunodeficiency.  His parents Vicki and Fred have since dedicated their lives to research, education, screening and eventually finding a cure for PI.

For years the foundation has collaborated with the CDC, the Wisconsin State Laboratory of Hygiene and Children’s Hospital of Wisconsin, and has reached out to every state Public Health Commissioner and Directors of state newborn screening laboratories with the end goal that every newborn would be screened for SCID. 

SCID is life threatening, with untreated infants seldom surviving a year after birth. With an early diagnosis and treatment however, they can be treated, and perhaps with emerging gene therapy, cured.

Yesterday the Jeffery Modell Foundation was proud to announce that by this year’s end, every state (plus the Navajo Nation, the District of Columbia, and Puerto Rico) will have SCID on it’s mandatory newborn screening panel. 

Read the full press release here.