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JDRF Canada: Collaborating on the impact of storytelling for T1D
It’s important to know the facts about type 1 diabetes — including that more than 300,000 Canadians have the disease; that Canada is one of the fastest-growing countries for type 1 diagnoses...
It’s important to know the facts about type 1 diabetes — including that more than 300,000 Canadians have the disease; that Canada is one of the fastest-growing countries for type 1 diagnoses in the world; that the rate of type 1 incidence is increasing by 3% annually for children under 14; and that children as young as one can be diagnosed.
But sometimes you need more than facts. You need to put faces to the statistics to tell the full story—and to convey the magnitude of the disease’s impact. And sometimes, that story is best told by children who live the day-in, day-out burden of the disease.
That’s what happens every other year, with Kids for a Cure Lobby Day, when JDRF, the world's largest non-profit funder of type 1 diabetes research, takes kids diagnosed with type 1 diabetes to Ottawa to talk to federal politicians. The kids tell their stories: when they were diagnosed, how the disease affects their lives, activities they love and how they feel about it all.
“The power of storytelling is amazing to see,” said JDRF President and CEO Dave Prowten. “We know how important it is to ensure the voices of our community are heard at the government decision-making table. This is our most important advocacy event, and these are truly inspiring young delegates,” he said.
“When a child helps a politician understand the daily challenges, that has much more impact than somebody like me just trying to explain it.”
Kids for a Cure is one of the key initiatives Medtronic has supported over approximately 20 years as a partner with JDRF.
“No one can do it all by themselves, and Medtronic really understands that,” said Prowten. “We have a strong partnership touching many parts of what we do, here in Canada and internationally,” he said. “Collaboration is a way we can get things done faster.”
JDRF was established in Canada in 1974, four years after JDRF was founded in the U.S. Although the focus was and remains on finding a cure, JDRF has helped fund research that has led to innovation and evolution - in the management of diabetes. It also continues to advocate for government support for research funding and expanded coverage of diabetes devices, such as insulin pumps and continuous glucose monitoring (CGM).
Breakthrough for pregnancy and babies
JDRF’s focus on funding important research has led to -significant alliances with the Canadian government, establishing its Canadian Clinical Trial Network and partnerships with the Canadian Institutes of Health Research.
One resulting project was called CONCEPPT, a study investigating the use of insulin pumps and CGM during pregnancy.
Led by Canadian researchers, and supported by Medtronic, the international study found that pregnant women living with type 1 diabetes had better blood glucose control and healthier babies, including a substantial reduction in newborn complications, if they used the technologies through the pregnancy.
“This literally changed the global standard for type 1 diabetes care for mothers, which is pretty amazing,” said Prowten.
Blue Balloon balancing act
Recently, in partnership with JDRF, Medtronic initiated a Blue Balloon challenge, asking people to keep a blue balloon in the air while going about daily activities, to get a sense of how hard it is to balance life and diabetes. Participants then shared their photos and videos online. Prowten gamely took part, his video featuring him cooking his lunch in a frying pan while keeping the bouncy balloon in the air.
“That challenge wasn’t easy,” he said, “and a good metaphor for the juggling act of life with type 1 diabetes,” he said. “If you have type 1 diabetes, you need to make an extra 300 decisions a day, about what you eat and drink, your sleep, your exercise. You never get a break.”
Whether enabling compelling stories, or through financial support, both sides of this collaboration share the same goal; until there’s a cure: improving the quality of life for people living with diabetes.