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Let’s talk about type 1 diabetes (T1D).It’s about people who wake up every day knowing their bodies need extra vigilance just to stay alive. For Jessica Diniz, President and CEO of what was once known as JDRF—now rebranded as Breakthrough T1D—the mission is to make every day better for people living with it while working towards cures for tomorrow.
Type 1 diabetes can be diagnosed at any age. Once thought to be a disease that only affected children, this autoimmune condition can be diagnosed in kids, teens, adults and even seniors. And in Canada? This country has one of the highest rates of new diagnoses globally.
Breakthrough T1D, through its global affiliates (in the United States, UK, Australia, Netherlands and Israel)funds research in 22 countries, bridging the best minds and the best research labs to accelerate progress in all areas of T1D research. As Diniz puts it, “We don’t care where the breakthroughs come from. We care that they happen, fast.”
A misunderstood disease
There are many misconceptions about type 1 diabetes. No, it’s not caused by eating too much sugar. It’s an autoimmune disease where the body’s immune system mistakenly attacks the cells in the pancreas responsible for producing insulin. By the time of diagnosis, very little to no insulin is being made anymore . . . Thus begins the full-time job of managing T1D through constant blood glucose level checks and insulin administration balanced against food, rest and play that starts the second you’re diagnosed.
If you’ve ever felt overwhelmed by the idea of managing your calendar, imagine balancing a literal life-or-death situation every single day. Managing type 1 diabetes is a constant balancing act that is 24/7. There are no days off, no weekends or vacations from T1D.
Making waves, not ripples
In November, 2024, the organization marked a major milestone making the name change to Breakthrough T1D,” to reflect the evolving nature of the disease and their mission. This was a bold acknowledgment that the organization’s work aims to support everyone affected by T1D, at any age and any stage of the disease, whether newly-diagnosed, or living with T1D for decades. But the mission remained the same. Improving lives today and tomorrow by accelerating life-changing breakthroughs to cure, prevent and treat T1D and its complications.
“When people think of breakthroughs, they think of some distant, almost unreachable concept,” says Diniz. “But our mission is to achieve breakthroughs. And how do we do that? We’re the leading type 1 diabetes research and advocacy organization and we help to make every day better for those living with this disease while we drive towards curing it.” She continued, “By making every day better that could mean mental health, accessibility, making sure that we’re reducing complications and people are living healthier lives while at the same time, funding the best research to ensure that we can work towards curing this disease.”
The organization’s advocacy efforts in Canada, together with the T1D community have helped to secure better access to life-saving devices, including insulin pumps and continuous glucose monitors (CGMs) for people who need them. Diabetes technologies, while making T1D easier to manage, and helping to alleviate both the physical and emotional burden of living with this disease, come with a financial burden—and an inequitable system where coverage depends on the provincial healthcare where you live.
In a particularly powerful story, a mother and her son, both living with type 1 diabetes, struggled for years without CGMs. The mother endured a terrifying hypoglycemic even (where blood glucose levels get dangerously low, leading to complications potentially even including death), leading to severe injuries and surgeries. Today, thanks to improved policies due to the organization’s unrelenting advocacy efforts, they now both use CGMs—and the difference is night and day. The device provides a continuous blood glucose level measurement that can be checked at any time, and more importantly – and alarm that lets you know if your levels are going to low, so you can adjust before it gets unsafe.
An often invisible disease
One of the toughest aspects of type 1 diabetes can be the appearance of ‘invisibility’. Even when wearing insulin pumps or glucose monitors, Teenagers living with this disease often hear, “But you don’t look sick” as if outward appearances could reflect the sleepless nights, the moments of disorientation, the constant balancing of food, activity and sleep or the fear of potential diabetes-related complications.
“We call it an invisible disability,” Diniz explains. “And that invisibility makes it harder for people to understand just how much work goes into managing it.”
Take a high schooler, for example. At 16, she’s not just thinking about getting her driver’s license—she’s grappling with proving she’s medically stable enough to drive. Or the 18-year-old planning her university life but wondering if she can risk moving away from her parents, who are her safety net when blood glucose levels plummet in the middle of the night.
Navigating the daily challenges
It is hard to imagine the challenges faced by parents of young children with type 1 diabetes. For many, the anxiety of sending a four-year-old off to kindergarten is already significant. Adding the complexity of managing a chronic disease like type 1 diabetes makes it even more overwhelming.
Schools without nurses pose additional hurdles, as young children cannot be expected to manage their insulin or administer injections on their own. In many cases, parents must visit the school during the day to check on their child. Managing type 1 diabetes in young children requires constant vigilance and effort.
Parents often take on the role of educator, meeting with teachers to explain the nuances of type 1 diabetes and training school staff on what signs to look for if their child is going low. They advocate for accommodations, such as allowing their child to have juice or fast-acting sources of sugar snacks at their desk in case of a low. These parents work tirelessly to ensure their children’s safety and well-being in a school setting.
They also teach their children to recognize signs from their own body when they are going too low or too high. This is a continuous process of education and adaptation, both for the children and their caregivers.
Community power
But there is strength in numbers. Breakthrough T1D’s Bag of Hope program for newly diagnosed families provides essential tools, including a teddy bear named Rufus. Rufus is cute but practical. Kids practice giving him insulin shots, making the overwhelming a little less scary. One parent said, “Rufus gave us a way to make diabetes less intimidating. He gave us hope.”
Their annual Breakthrough T1D Walk fundraising event, with Walks taking place across the country throughout June, is another cornerstone of community building. It’s a fundraiser that brings together the T1D community for solidarity and for kids to meet others like them and realize they are not alone.
Hope on the horizon
There are breakthroughs happening right now in research labs across the country and globally. Clinical trials using stem cells to that can be implanted with the hope they will start producing insulin are already underway. “We’re not talking science fiction,” says Diniz. “This is happening today, and Canadians are part of these trials.”
But for Diniz and her team, success encompasses both research and changing lives. They’re fighting for a future where no parent has to send their four-year-old to kindergarten worried about whether they’ll be safe without a nurse. They’re advocating for policies that erase the absurd disparities in healthcare coverage across Canadian provinces. And they’re doing it all while holding fast to the belief that a cure is not just a possibility but an inevitability.
“We’re here for the people living with Type 1 diabetes today and tomorrow,” Diniz emphasizes. “And we won’t stop until the cure is real.”
That’s not just optimism. That’s momentum.