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Remembering Vicki Modell

Vicki Modell, alongside her husband Fred, channeled grief over their son’s death into the Jeffrey Modell Foundation, which raised millions and helped a global community of patients cope with primary immunodeficiency.

Vicki and Fred Modell in front of a photograph of their son Jeffrey
Vicki Modell, who cofounded the Jeffrey Modell with her husband Fred, died November 30, following 30+ years of advocacy for primary immunodeficiency patients. Their son Jeffrey, who died at 15, is pictured behind them.

Over her lifetime, Vicki Modell accomplished much as an advocate for primary immunodeficiency patients and, through it all, she remained Jeffrey’s mom.

Jeffrey, a courageous boy with an endearing sense of humor, died in 1986 at 15 despite the best efforts of his parents and medical team. Vicki, who died November 30, and her husband Fred never forgot Jeffrey’s plea that they “do something” about primary immunodeficiency diseases, a group of more than 400 different conditions that impact the immune system. Without treatment, patients get frequent infections, which can be serious and life-threatening. Plus, being ill so often can keep them from school, work and other activities.

The Modells responded to their personal tragedy with decades of commitment to help other children and adults living with PI. They started the Jeffrey Modell Foundation with just $500 and the hope of saving the life of even one child. The foundation expanded and evolved into a nonprofit with a big appetite for expansion and impact.

The JMF championed newborn screening – a key to diagnosing the most dangerous PIs before it’s too late. The foundation widely publicized a list of warning signs of PI, translating it into 50 languages; it sponsored a Harvard University immunology research prize; and launched the Jeffrey Modell Centers Network, a global platform “to optimize research advances, diagnosis, treatments and connectivity.” According to a 2022 journal article co-authored by several researchers and the Modells, the constantly expanding network includes 915 expert physicians at 402 institutions in 318 cities and 87 countries across six continents.

News of Vicki’s death inspired 100+ social media tributes from people around the world, including patient advocates, researchers, physicians, colleagues and moms who called her “an angel on earth” for counseling them as they dealt with the frightening diagnosis of PI in their own children. An immunodeficiency group in Prague said, “Vicki’s way of transforming tragedy into this tour de force called JMF will keep inspiring thousands.”

Do Something movie poster - A film every parent - and everyone - should see

In 2021, the foundation also produced a  documentary called “Do Something,” creating a historical record of Jeffrey’s life and the foundation’s impact. In it, Vicki said she felt Jeffrey remained with her as she went about her work in his name. Jeffrey Modell Centers have enrolled more than 258,000 patients – a startling number considering how little was known about PI diseases during Jeffrey’s lifetime.

“He thought he was one in a billion people to have this disorder,” Vicki Modell said in the film.

The Modells made it their mission to connect patients, especially young people, so they would know they were not the only ones. Thanks to the Jeffrey Modell Foundation, children with PI met one another. In the documentary, three young men - a paramedic, a priest and an entrepreneur/investor - are seen together in snapshots through the years at parties and baseball games. The Modells brought the PI patients together as children and took visible joy in their growth, good health and accomplishments.

In the documentary, Lisa Shuman, mother of one of the boys, recalled an early conversation with the Modells.

“They said don’t look back at what happened to Jeffrey. Just keep looking forward.”

The documentary, “Do Something,” can be viewed on the Modell Foundation’s YouTube channel: