Jeffrey's Parents Did Something

Film recalls a son lost to primary immunodeficiency and the legacy built in his name.

Jeffrey Modell - Do Something Documentary - yellow raincoat

For a long time after losing their son, Vicki and Fred Modell couldn’t say his name.

In a new documentary, Vicki Modell explains that it was too painful to speak of the blue-eyed boy, who lived only to age 15, and died in 1986 from complications of a primary immunodeficiency (PI).

Jeffrey.

But as the Modells forged their grief into a mission, they did say his name and created the Jeffrey Modell Foundation. The film, “Do Something: The Jeffrey Modell Story,” gives viewers a sense of who Jeffrey was and why his parents poured their energy into the organization, which began with a $500 budget and the hope of saving even one child’s life. More than 30 years later, as demonstrated by interviews with doctors and patient families all over the word, it has done so much more.

In the film from writer/director/producer Lisa Binns, thankful parents and medical experts marvel at how one New York couple made such an impact on the field of immunology. 

They raised millions of dollars and organized the medical community around the world, establishing JMF centers in 86 countries on six continents.

The Modells pioneered public education about the symptoms of primary immunodeficiency, which when Jeffrey died was still an elusive, poorly understood condition. 

They helped lobby the United States Congress and individual states to screen newborns for the most serious primary immunodeficiency, Severe Combined Immunodeficiency (SCID).

The richly visual documentary, from producer Joan Lynch of ESPN's "30 For 30" series, demonstrates how those accomplishments righted some of the wrongs that dogged Jeffrey, an intelligent, athletic, adventure-seeking kid.

In the 1970s and 1980s, even the best doctors knew too little about primary immunodeficiency, now understood as a large group of more than 350 different diseases. A primary immunodeficiency, well explained by a doctor in the film, means that someone was born with a broken, faulty immune system, leaving them especially vulnerable to infections.

To help adrift patients, the Modells raised money and helped researchers across the world meet each other, compare notes and move the science forward. Today, a child born with a PI is more likely to get diagnosed and treated, freeing them up to go to school, play sports and live a life that’s not dominated by illness and hospitalizations.

Jeffrey never met a fellow patient who had primary immunodeficiency, but that, too, has changed. 

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

Thanks to the Jeffrey Modell Foundation, children with PI met each other at events and found out they weren’t alone. 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 them together and took visible joy in their good health and accomplishments. As adults, the men talk about the Modells like you would a favorite aunt and uncle.

But the documentary balances all the ribbon cuttings and thriving patients with the persistent memory of Jeffrey. The film fleshes him out as a real human being, specific in the world and irreplaceable to his parents. It’s his voice that opens the film. For the documentary, the Modells unboxed their family albums, sharing a cascade of photographs of Jeffrey from his chubby-cheeked baby days to late childhood and early teens. 

Jeffrey in the pool with Mom. Jeffrey and Dad playing baseball. Jeffrey learning to sail. Jeffrey blowing out birthday candles.

Flashing an early gift for comedy, he taped a faux radio show - “JAM Talk” – an archived recording that finds a fitting home in the film. 

“We did a man on the street the other day,” a young Jeffrey says in the audio. “I very bravely walked onto the streets of Manhattan, in dark sunglasses, so of course no one would recognize me.”

Then he flags down a woman who turns out to be a big fan of the show and - in Jeffrey’s falsetto voice - says “that host - Jeff, Jeff Modell? He’s just so sexy!”

Jeffrey replies, deadpan: “Well, um, thank you. I mean. I’m sure he’ll appreciate that.”

Those interviewed in the film remember Jeffrey as funny, courageous and positive, but also understandably frustrated. He once told his parents he wished he had leukemia because at least that was something concrete and he’d know what could or couldn’t be done. “Do Something” wasn’t just a happy title for a story of great accomplishment. It was a challenge from a desperately ill son to his parents.

The challenge is alive, still. In the film, Fred Modell closes a medical meeting with these words: “Together, let’s keep moving.”

In “Do Something: The Jeffrey Modell Story”, the long-married couple share the work they did, but also, in detail, all that they lost. Through tears, Fred Modell says he continues to miss his son. Vicki Modell says she feels he’s with her, watching her work in his name. They even describe the other-wordly minutes and hours that immediately followed Jeffrey’s death. The couple left New York’s Mount Sinai on foot.

“Fred and I just kept walking...It took a long time to realize what happened. Very long.”


“Do Something: The Jeffrey Modell Story” is available on iTunes, Amazon, Google Play, YouTube, Vimeo, Vudu, and DVD. Visit dosomethingdoc.com to learn more.

To help share the documentary, the Jeffrey Modell Foundation is sponsoring a $2,500 watch party. Do you have a creative idea for bringing people together to get inspired by the messages in the film? See the contest application here.

Stay informed and connected on the foundation’s Facebook page and the documentary’s Facebook page.