Diabetes Forecast

Bond of Brothers: Teen Researchers Tackle Type 1

Identical twins pursue a research career—and look for answers as to why only one of them has functioning beta cells

By Jon Holten , ,

Michael (left) and Jake Carrion
Photograph by Michelle Grady

They studied at Oxford and conducted diabetes research at Harvard and Yale, yet Jake and Michael Carrion made their greatest impact when they ventured into independent research. The brothers eventually pinpointed specific genes that likely regulate the autoimmune response that causes type 1 diabetes.

Then in June 2016, the siblings graduated from high school and turned 18.

Identical twins from Jericho, New York, Michael and Jake have much in common: brown hair, green eyes, traveling soccer, debate club, student government, stellar GPAs, lofty scores on college entrance exams, and an immense appetite for diabetes research. Their commitment to science has opened doors and impressed scientists at leading research centers.

The Age of Wisdom

“The level of their work is beyond their age,” says Li Wen, MD, PhD, senior research scientist in internal medicine at Yale School of Medicine. “It’s at least graduate level, almost PhD level.”

Diane Mathis, PhD, professor of microbiology and immunobiology at Harvard Medical School, says: “They’re bright and knowledgeable and ask really interesting questions. High school students with their knowledge of type 1 diabetes are very rare.”So rare, in fact, that a publisher of peer-reviewed medical and scientific journals asked them to review articles—an honor usually reserved for scientists with a string of credentials after their names, not teens still needing parental permission.

Their passion for research was sparked by their greatest difference. Jake has had type 1 diabetes since age 4; Michael doesn’t have it. At age 13, they learned that type 1 has a genetic component. They were perplexed. “How can we share all of our genes and one of us have this lifelong disease and the other one be perfectly fine?” Jake remembers thinking.

To learn about type 1 diabetes, the brothers went online. More knowledge led to more questions. Soon they were reading scientific journals and envisioning careers in diabetes research.

“Over time, it grew into looking for more and more complex answers until eventually we realized that not everything is known,” Jake explains. “At that point, it just kind of set in that, wow, there is so much information that’s missing. Would we be able to help in any way?”

Common Cause

John and Debra Carrion had built a good life on Long Island, about 30 miles east of Manhattan. And their 4-year-old twins were happy, healthy bundles of energy—until Jake developed a perpetual thirst. He was diagnosed with type 1 diabetes in the emergency room.

“Jake was in the hospital for four or five days,” Debra recalls. “He was crying to get out, and Michael was crying to go see him.”

There was no known family history of type 1 diabetes, so they all learned together about the need to balance insulin, carb intake, and exercise. Amid efforts to guard Jake’s health and an underlying fear for Michael’s risk of developing the condition, diabetes imposed a rigid, new lifestyle on the Carrions. “It was devastating to the entire family,” says Debra, a psychologist.

It also inspired them to take action and make the search for a cure their common cause. John and Debra organized the Kids Party for a Cure to support the University of Miami’s Diabetes Research Institute. After the event raised $250,000 in its first year, 5-year-old Jake asked, “Now do we have enough money for a cure?”

He Says, He Says

Growing up with diabetes in the house affected both boys. Jake remembers feeling angry and thinking it was unfair that he got diabetes and Michael didn’t. He learned to manage his chronic condition by making choices that helped control his blood glucose and prevent long-term complications. “I think it just made me more appreciative,” says Jake, adding that diabetes has “given me opportunities and a purpose in life.”

For Michael, resentment over Jake receiving more attention from his parents didn’t last. “I realized that it wasn’t because my parents favor him; it’s a necessity to stay on top of his diabetes,” he says.

The identical twins grew their own distinct personalities. Jake became cautious, meticulous, and resilient. Michael became outgoing, focused on the big picture, and protective. They quickly found that they complemented each other as aspiring scientists.

Travels in Understanding

Jake and Michael were 14 when their quest for understanding first took them beyond Long Island. Since then, every real-world experience has further motivated them to learn more about diabetes and a life dedicated to research.

John Carrion, an executive with Deutsche Bank, spent a month in the London office in mid-2013 and took the family with him. Oxford University offered a four-week summer program, so Jake and Michael, recent graduates of ninth grade, enrolled in two classes: genetics and modern medicine.

They returned home eager to get into a research lab. Later that summer, the family spent two weeks in Florida while Michael and Jake learned lab techniques at the Diabetes Research Institute. “That’s the first time we were really exposed to this entire research process,” Jake says, his hands defining an expanding universe.

In the fall, they signed up for their high school’s three-year science research program. They learned research methods and practices and developed their own research projects. After their sophomore year, they landed an eight-week stint in the lab of Harvard’s Mathis, an authority on the role of immune cells of various types in the development of type 1 diabetes. The B cells mistakenly alert the immune system that something foreign has invaded the pancreas, dispatching other white blood cells in an attack that destroys insulin production.

To help create new models for studying immune system interactions in mouse models, Jake and Michael developed and tested a fluorescent marker to be inserted into a specific gene present only in B cells. Because the marker glows, it can be used to track the activity of B cells under a microscope.

“It was an incredible experience,” Jake says. “It showed me that you can create tangible results, you can make contributions in the world.”

In the Lab

Back at high school, Michael and Jake took on a project that uses statistics and computer science to analyze and interpret biological data. Mathis’s lab had already discovered that regulatory T cells—called “Tregs,” they suppress the immune response—differ based on location within the body. The twins sought to compare Treg genes in the pancreas and in other locations.

They tapped into genome databases compiled by scientists around the world. Over a span of eight months, working one to three hours a day, the twins used specialized software to whittle 24,000 possible genes down to three that are found only in pancreatic Tregs and that suppress the immune response that leads to type 1 diabetes.

“We were the first people investigating these genes with regard to the pancreas. We were pioneering this idea in the pancreas, which I found really cool,” Michael says.

Their discovery of these genes in pancreatic Tregs suggests a potential for therapies to turn off the immune response for type 1 diabetes by targeting specific genes in the pancreas. That could be used to either prevent diabetes in people with a genetic predisposition for type 1 or allow insulin-producing pancreas or beta cell transplants—without the side effects and risks of drugs that prevent the body from rejecting transplants. 

After their junior year, Michael and Jake spent eight weeks in Wen’s lab at Yale, working with high-tech equipment to examine the characteristics of different B-cell treatments, a key step in making improvements to potential therapies to prevent type 1 diabetes.

Their parents beam with pride because their sons turned a childhood diagnosis into a scientific pursuit of something remarkably positive. “We’re blown away by what they’ve been able to accomplish,” says John Carrion. “And, really, they’ve done this all themselves.”

A Future in Research

The brothers plan to earn doctoral degrees, possibly in immunology, on their way to careers in diabetes research. This fall, Jake will attend Columbia University in New York City, and Michael will attend the University of Chicago.

The boys’ brotherly bond is unmistakable. Michael has invested a portion of his youth in research projects as a gift to his twin because “it just as easily could have been me.”

“Watching Jake deal with this disease, it was initially heartbreaking,” Michael says. “But after watching the strength and perseverance he displayed in dealing with this diagnosis, it served to inspire me and say, ‘How can I give back to him?’ ”

Jake is filled with gratitude for his brother’s personal commitment to finding a cure. “I wasn’t expecting him to be as driven and determined as I am, so I’m really thankful for just how involved he is in all of this work,” he says.

If an identical twin has ...

  1. Type 1 diabetes, the other twin has a 65 percent chance of developing it at some point
  2. Type 2 diabetes, the other twin has a 75 percent chance of developing it at some point

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