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I’ve lived in Toronto my entire life. I’m currently 60 years old, I was diagnosed in 1970, 53 years ago. I remember getting up in the middle of the night, needing juice because I was so thirsty, I was going to the washroom all the time. I remember being diagnosed, going to the hospital for over two weeks. I went to the hospital from one house, came home to a new house, because my family moved while I was in the hospital. 

Can you share what T1D management was like 50 years ago? 

It certainly was different. Everything was very regimented. My mother had to weigh all the food I ate. I still remember the scale that measured the food I could eat. You based how much food you ate on the set amount of insulin that you were given once a day.  

I started off with a glass syringe that had to be sterilized every night. One needle in the morning, and urine testing, you didn’t really know what your blood glucose level was. 

The first change was multiple injections, a basal dose of insulin that lasted 24 hours in theory, and then you would take a shot before every meal, a faster acting insulin. That was the real big change for me, well before insulin pumps were available to the public. Medtronic was working on developing a pump around the same time. The next big change in management was the at-home blood glucose test, but you could still only check it at home (couldn’t take it with you to check anywhere else). It was big and bulky, like a VHS tape. 

At least you knew what your blood glucose levels were, and then we moved into much more accurate testing, which allowed us to adjust our insulin. The early 80s was when that all started to change. 

What innovation or research update has excited you the most as someone living with T1D? 

Companies like Novo Nordisk and Eli Lilly who started to develop newer insulins, as opposed to the beginning when it was just one time a day and it was a bovine/porcine derivative. This was more pharma research than clinical research. 

The research that JDRF was funding at the time was cure-based and scientific, very different from today’s type of research. There were all types of researchers working on complications in those days as there were so many more people that experienced T1D-related complications. The research world after the discovery of insulin became about mitigating the complications as everyone in the 40s, 50s, 60s all had complications from the disease. 

When JDRF was founded in 1970 in the US, and Canada in 1974, that is what really pushed the needle forward (in T1D research). 

What was it like as the child of one of JDRF Canada’s founding families? 

I was diagnosed in 1970, at seven-years-old, and my parents were very progressive people, not a sit around and wait for things type of people. Immediately they went to a CDA (Canadian Diabetes Association) meeting, and they were told how to use diet and exercise to help people live better with diabetes. 

My mother put up her hand and said, ‘what about a cure for people’? She asked the chairman about research. He said, ‘that’s what the government does’, and she left the meeting crying. 

Soon after, she got connected to the Garfinkle family who had just started a (JDRF) chapter in Montreal. She dug into her American roots and connected with the Lurie family in NYC (who had helped to start JDRF International), and she and my father spent a lot of time and energy and worked on becoming the first affiliate of JDRF.  

My mother’s full-time job was JDRF after that. She volunteered her entire life. My father was heavily involved as well. 

I also spent most of my life involved with JDRF in some way or another. I got involved in the Rolls Royce Raffle as a teen. I felt like I should volunteer too, knowing that my parents were working so tirelessly for me. The Walk and then Ride came along, and I was on the Toronto chapter board, and then the Toronto chapter Chair for a while.  

Years went by, I went to school, got married, and got involved in JDRF International (JDRFI) too. I always felt it was my responsibility to give back and continue my parents’ legacy, as this was my disease. I’ve sat on both the Canadian Board, and the International Board. Nobody else has the history that I do. I do one-year renewals on the JDRF Canada Board, if they say it’s time for me to leave, it won’t do anything to change my involvement. I also sit on the International Global Mission Board, I say it’s my second full-time job. 

What has the support of donors and volunteers allowed JDRF to accomplish? 

We are a volunteer-staff partnership organization like no other. Most charities are staff-led, and volunteer supported. JDRF from day one was volunteer-led. The first office was in the basement of our house. It was all volunteers. Eventually, they felt we were raising enough money to hire one staff member. But without the volunteers, there would be no organization. We couldn’t do what we do without them. 

How is JDRF there for those impacted by T1D? 

Tremendously, in a nutshell. If there was no JDRF, there would be no hybrid-closed loop system on the market. It wouldn’t exist. I was on the International Board when that was brought up, we were at a tipping point. When I first came on the Board, most of the research we funded was cure-based, lab-based research. We had never funded companies that were going to produce products. But our Board then said, ‘maybe it’s time. Maybe it’s time we invest in these companies coming to us looking for funding for devices, innovations and technology’.  

We took some of our research funds and said we would invest in Dexcom (out of California). It was very contentious, there were some heated discussions, Aaron Kowalski (who also has T1D) who was head of the JDRFI Research Department, and it was approved. Dick Allen was a grandparent of a child with T1D, went to get a pump for his grandchild, and he put a group together and he created Tandem. And with Dexcom that got us to the closed-loop system. 

For me personally, it  (the hybrid closed-loop system) was a lifesaver. I have hypoglycemic unawareness. I’d be riding on my bike and my blood glucose would drop below 2 and I had no idea. It’s improved my quality of life in tremendous ways. 

And here in Canada, we still haven’t strayed from our cure-based research roots. The Edmonton Protocol, discovered by Dr. James Shapiro was funded by JDRF,  and we are still funding stem-cell based research.  

I myself am willing to be part of the gene-edited Vertex study to see if stem-cell transplant could work as a function cure for me. 

What would a cure mean to you? 

To me, the $100 million question is what an ‘actual’ cure is. It will be a phased approach. It won’t be overnight; I won’t wake up and no longer have T1D. 

I already have the first step of that cure. That’s the closed-loop system. The ultimate cure, stem-cell replacement for those of who live with it, another functional cure is something like T-Zield, taking a shot that stops you from going to phase 1 to phase 3 of T1D. Screening and prevention. In the future, maybe through vaccinations. They’ll be able to narrow down what causes the autoimmune attack and stop it from happening. And I am 100% confident that will happen. And that’s something I say having been both involved with JDRF and living with T1D for over 50 years. We are in exciting times. 

Dr. James Shapiro is a British-Canadian surgeon best known for leading the clinical team that developed the Edmonton Protocol – an islet transplant procedure for the treatment of type 1 diabetes (T1D). Dr. Shapiro is Professor of Surgery, Medicine, and Surgical Oncology at the University of Alberta and the Director of the Clinical Islet Transplant Program and the Living Donor Liver Transplant Program with Alberta Health Services. He holds a Tier 1 Canada Research Chair in Regenerative Medicine and Transplantation Surgery. 

Dr. Shapiro obtained his medical degree from the University of Newcastle upon Tyne and trained in surgery at the University of Bristol. After coming to Canada in 1993, he received training in liver transplantation and hepatobiliary surgery at the University of Alberta and earned a PhD in Experimental Surgery. 

Shapiro developed a brand-new approach to optimize islet cell transplant engraftment. Of almost 300 islet transplants attempted before 1999, fewer than 10% of these worked in patients. His protocol was designed to address many of the previous shortcomings by transplanting a sufficient number of islets into the liver by using multiple donors, and by testing a novel anti-rejection strategy that avoided steroids as immunosuppression to allow the transplanted islets to work at their best. The result became known internationally as the ‘Edmonton Protocol.’ 

Shapiro led the clinical team that tested his approach in seven initial patients, all of whom (100%) were able to discontinue the need for insulin injections for periods beyond a year. He was the lead author in the landmark paper published in July 2000 in the New England Journal of Medicine detailing the results of the Edmonton Protocol.  

In the 24 years since, Dr. Shapiro and his team have performed this transplant 765 times in over 300 Canadians and continue to refine and optimize the protocol. This treatment has been replicated many times internationally, and over 2000 patients worldwide have now received islet transplants from the foundations developed by the Edmonton Protocol. 

JDRF Canada recently spoke with Dr. Shapiro about the future of cure-based T1D research as they commemorate 50 years of the organization. 

JDRF Canada: What excites you most about stem cell therapy as a potential cure-based therapy for type 1 diabetes? 

Dr. Shapiro – Diabetes is a biological disease. Insulin injected into the fat below the skin is a chemical but imprecise way of controlling the disease. By replacing the beta cells in the pancreas that are killed or not functioning well, cellular transplantation provides an elegant biological solution to control this biological disease. I am particularly excited about stem cells for the potential to cure not just T1D, but all types of diabetes. Injected insulin is life saving in the short term, but the subcutaneous fat is a weak link in the chain, failing to provide perfect glucose control. Stem cell-based treatments have the potential to function in a way that most closely resembles the process of insulin release and control that happens from moment to moment inside the normal healthy body. 

However, as of right now, powerful anti-rejection drugs are required for cell transplants to survive, and these drugs carry potentially risky side effects. So, this means it’s not currently a good option for children and for many adults. How could we circumvent a need for these drugs with stem-cell-based islet transplants, and make the treatment safer and more available for all? 

This can be achieved either by altering the cells themselves to help them evade immune attack, or it can be done by different kinds of approaches that induce something called immunologic tolerance, but this has proven in the past to be a tough nut to track. 

I’m most excited about the potential to make personalized cells, using an individual’s own cells to work as treatment. This is the biologically closest option from a concept perspective, albeit the hardest from a manufacturing standpoint using today’s methodologies – but this will change and become much simpler over time. We need to still deal with autoimmunity in T1D, but this can be potentially achieved either through biologic drugs, or far milder gene editing. 

I’m very excited about the progress of T1D research, especially within the last five years. But I believe that a cure is really within all our grasps. It’s going to require intense collaborative scientific effort and a lot of funding, but I firmly believe this is possible and will happen. 

The Edmonton Protocol, which was pioneered by you and your team, is considered the first step on a path to a stem-cell based cure for T1D. How did you feel when it was shown that islet cell transplants could be successful in helping to treat patients with uncontrolled T1D? 

To be honest, the first Edmonton Protocol patient we transplanted – a teacher from Yellowknife, I didn’t feel particularly excited. You have to remember that there had been nearly 300 attempts before, and very few worked. His first transplant brought his insulin down by half. We decided to give him a second transplant and he came off insulin entirely.  

It was my first year of practice as a busy transplant and liver surgeon, and we started two new programs that year (pancreas transplant and living donor liver), and I really didn’t believe that cell transplants would work. It was only when the 7th patient was treated and all seven were insulin free that I was pretty excited. Clearly, we had something different, something that was clearly working, something that was reproduceable. It was a delayed excitement however, and it was an exercise in patience getting the paper out in the New England Journal of Medicine (it required lots of revisions, they kept asking for further data etc.), but finally it really re-invigorated the field, both in islet cells and the future of stem cell therapy. 

Other than stem cell research, what other area of T1D research do you find holds the most potential for a cure? 

Preventing T1D at the outset in children and adults at highest risk would have the biggest future impact, avoiding need for transplants. Preventing autoimmunity in the beginning stages and combining that with islet cell differentiation techniques learned from all the work with stem cell research could be applied early enough to prevent T1D from occurring. If we can induce cellular regeneration in the pancreas in the native islets along with stopping autoimmunity, that would be an elegant solution to reduce new cases of T1D. The challenge is doing this without inducing pancreatitis and other risks to the organ. Treating patients and preventing the disease will be an incredibly important next step. 

In terms of type 2 diabetes, the newer drugs like Wegovy and Ozempic, these GLP-1 agonist medications are really making inroads, and this will be a game-changer for this disease to reverse or treat before it can become life-threatening. 

Stem cell therapy is tantalizingly close, which is why I can’t stop thinking about it day and night. But I see new frontiers every day in the treatment of all types of diabetes. 

Things are looking bright, but they never happen quite as fast as we want them to as scientists, and certainly not as fast as children and their desperate parents need. We need new ideas, new resources and new partnerships to make it happen. And I firmly believe our partnership with JDRF Canada is going to make that happen. 

What role do you see JDRF Canada playing in the next (hopefully less than) 50 years when it comes to T1D cures research? 

Because we are so tantalizingly close, an immense amount of intensive, focused translational research needs to be done. The potential to make autologous islet cells (made from your own blood cells), is an ambitious, challenging and expensive approach, and to move this forward we will need both philanthropic and industrial support to get to the next stage. I can’t stop thinking about that next set of seven patients, all of whom will be off insulin – but with no need for antirejection drugs. This will happen with JDRF, their connections to philanthropy and ability to move grants rapidly through to the researchers that will get this job done.  

I am incredibly grateful to JDRF for their support, for enabling the work that led to the Edmonton Protocol and moving the field forward since then. JDRF has been phenomenally powerful as an advocate, with governments, with patients; it’s been a wonderful partnership that will need to continue to get us across the finish line. 

Myrna Weiszner, one of the founders of the JDRF Winnipeg chapter and her daughter Tammy, diagnosed with type 1 diabetes (T1D) 47 years ago talk about how living with T1D has changed over the years, and their involvement with JDRF. 

Do you remember what it was like when Tammy was diagnosed? 

Myrna – It was very scary; I was such a young mom. I was just in my early 20s. Tammy was just a toddler. It was spring and Tammy was outside playing and continuously drinking copious amounts of water and not making it to the bathroom. I recall reprimanding her about not attending to the bathroom sooner. Tammy’s dad had type 1 diabetes and it clicked that I should test her urine. At the time, the only way to test was via urine testing. Sure enough, her sugar was elevated. We were living in a small community, and we rushed into Winnipeg. We arrived at midnight, and she was admitted to Children’s Hospital.  

At that time, parents were not permitted to spend the night with their child in the hospital. When I look back, what a brave little girl, at 4 years old. We were permitted to return at 7am and promptly we did.  

When we arrived at 7am, Tammy informed us she was given insulin at 3am.  

I was so distraught; I didn’t even remember it was Mother’s Day. I was told Tammy would not be discharged until I could administer an injection. The thought of giving Tammy a needle was very difficult for me therefore I had to practice on an orange. They reiterated Tammy would not be discharged until I could give her an injection. I knew I had to do it therefore I learned. Reflecting, giving her insulin never got easier, I continuously struggled. When Tammy was 6 years old, I think she wanted to show that she was a big girl now – she gave herself insulin and never looked back.  

Tammy – I don’t remember much about the diagnosis; I was 4 years old and I’m 51 this year. I remember urine testing, the tablet fizzing in the test tube waiting for it to change colour. The darker the colour, the higher the sugar. This was completely inaccurate and, reflecting, I don’t know how I survived. I was four years old, and we had to take a potty with us for a urine test, everywhere we went. However, this was all that was available at that time, and therefore we made do. I remember the diet being very restrictive and life was quite regimented.  

Even corn flakes (cereal) was considered to be too high in sugar to eat. Although I have adapted and adopted the most recent technology, I cannot let go of the routine. When I was growing up (with T1D), I ate relatively the same thing every day at the same time. I took the same amount of insulin, which was (called at the time) Regular and it took forever to work.  

Myrna – and if Tammy’s sugar was high, we had to exercise. Walking became a regular mode of exercise for our family.  

Tammy – I remember drinking a can of pop thinking it was sugar-free however it was not. The only way to bring down my blood sugar was to exercise therefore I moved all the firewood from the garage to the basement, just trying to lower my sugar.  

I had found my thighs to be the best place to inject insulin however I now have bumps, which is scar tissue from repeated injections in the same site. Needless to say, now I rotate my sites.  

Myrna – When Tammy started kindergarten, I was so nervous. What would happen if her sugar was low? Tammy was the only child in the entire school that had T1D, and the teachers knew nothing about diabetes. I had to feel confident that Tammy would be able to recognize a low and treat it accordingly. One morning I remained at the school longer than usual, and the teacher asked me “do you see any other parents hanging around my door. School ends at 3pm”. Needless to say, I am still scarred by her lack of empathy.  

Myrna – Once Tammy was on the school bus, and a boy told everyone that Tammy had diabetes and she was contagious. Therefore, even her closest friend did not let Tammy sit next to her. The bus driver told Tammy she needed to find a seat otherwise they couldn’t leave. Tammy ended up sitting with the patrol in the first seat. She arrived home sobbing. After hearing what had occurred, I called her best friend’s mother to notify her. I expected her to discuss the situation with her daughter, instead, she said “well Myrna, Tammy is going to be living with diabetes for a long time, so she better get used it”. 

I learned a lesson too; kindness and understanding should not be taken for granted.  

Myrna – Tammy was once with a babysitter, she was low (hypoglycemic), so they called an ambulance. We were still living in the small town then, and the hospital gave her glucose, and it was too much and ended up sending her (blood glucose levels) sky high. So, we took her by the hand and walked her around the town, we just walked and walked – and she must have felt terrible with these sugar swings, but we did what we had to do. 

How life has changed for those with type 1 diabetes today! Thanks to JDRF’s accomplishments.  

How did JDRF come into your lives? 

Myrna – Mitch and Jimmy Garfinkle came to Winnipeg and gave us a talk about JDRF, and it just sounded phenomenal. They talked about research, and it gave me hope. I thought – my daughter isn’t going to live long enough without T1D research. There wasn’t much known about T1D at all (then). Four couples got together and formed the Winnipeg chapter and here we are. 

Our first fundraiser was Pearl and Earl Kaplan, one of the other founding families (they had a grandchild with T1D), who celebrated a special anniversary and in lieu of gifts, they requested donations to JDRF. 

Tammy – Darrin Davis (son of another Winnipeg founding family) was the only other person with T1D I knew back then. 

How has T1D management changed over the years? 

Tammy – Today I use a continuous glucose monitor, the Dexcom 7 and the Omnipod dash (insulin pump). Growing up, my parents often reminded me, that Darrin Davis used a pump and how great it was. For whatever reasons, I still wasn’t ready. Around 2005, I finally decided to give a pump a try. It was the animus tubed pump. I was receiving insulin 24 hours a day with the push of a button.  

As revolutionary as it was, the CGM in my opinion, has proved to be monumental in managing T1D. Before the CGM, we knew nothing about what was going on in our bodies, really. 

When you were a child back then with T1D, you got your hemoglobin A1C tested every three months or so, and showed a notebook of blood sugars to the doctor for them to assess and make adjustments as needed. Now I can assess trends, promptly make adjustments, review history. Overall, I can be proactive instead of reactive. I often think of newly diagnosed children and how different their lives will be as a result of the advancements and knowledge in managing T1D.  

Managing T1D has significantly changed and greatly improved the quality of life and outcomes for individuals living with T1D compared to 50 years ago.  

But despite these advancements, daily challenges remain.  

What has JDRF meant to you both? 

Myrna – JDRF has been a beacon of light and is like family to me. The volunteers, support staff, brilliant researchers, donors and contributors have made JDRF what it is today. JDRF has made significant contributions to improving the lives of people living with diabetes by funding research for better treatment, technology and ultimately a cure.  

Tammy – the correct terminology is, you aren’t a diabetic, you have diabetes. But truly, diabetes is my life. If there was a cure – I really can’t even imagine it. It would be life-altering. I spent my teenage years wondering about ‘will I make it to adulthood, and how will it be?’, then I hit adulthood and wondered what middle-age might look like having T1D. Now I am 50, and I worry about the potential T1D complications I could experience. Each period of my life, I have experienced different thoughts and worries. Just the idea of not having to worry anymore would be remarkable. Because of JDRF, I look forward to new technology and improvements in managing T1D. Screening for and preventing new diagnoses would also be amazing. If a cure is discovered in my lifetime, what a miracle it will be. However, in the meantime, I will just continue to live my best life.  

Myrna – it was so encouraging and hopeful walking through the labs where JDRF-funded research was conducted. JDRF has played a crucial role in enhancing the quality of life of individuals throughout the world living with T1D. 

Wednesday, March 8 is International Women’s Day (IWD). IWD asks us to imagine a world that knows gender equity. Globally, we are facing multiple crises that are putting immense pressure on communities, and so achieving gender equality is more vital than ever. Ensuring women’s and girls’ rights across all aspects of life is the only way to secure prosperous and just economies, and a healthy planet for future generations.

The theme for 2024 is “Invest in Women: Accelerate Progress” and is a rallying cry to take joint action and #InvestInWomen to ensure women are not left behind.

This could not be a more appropriate theme for JDRF Canada, and we celebrate the achievements of the Canadian women researchers who are advancing the most promising research in type 1 diabetes (T1D), a field which has a long and rich history of women-led research leading to significant breakthroughs.

Today, JDRF Canada funding helps to support a number of women T1D researchers who are continuing the legacy of those who came before them and led the way, charting their own paths and investigating potential cures, mental health supports and improving lives for people living with T1D now.

Meet these women researchers who have been supported by JDRF Canada funding over the past year, and whose work is helping to improve the lives of people affected by T1D today, while getting us closer to cures tomorrow:

In partnership with the Canadian Institutes of Health Research (CIHR), JDRF Canada awarded two Research Excellence, Diversity, and Independence (REDI) early career awards for Black people and racialized women scholars.
Dr. Yi-Chun Chen, University of British Columbia
Dr. Chen is a former JDRF postdoc whose career goal is to establish an independent research program focused on studying the adaptive responses of beta cells during the development of T1D, to inform the design of therapeutics to protect beta cells in T1D.

Dr. Hyekyoung (Cindy) Sung, York University
Dr. Sung’s career goal is to identify pathways important in T1D, characterize disease sub-types, and work on new precision medicine approaches for T1D. During this award, she will characterize the importance of a certain immune pathway in T1D and carry out preclinical studies to test drugs that target this pathway as a possible way to prevent or treat T1D.

J. Andrew McKee Fellowship in Type 1 Diabetes
Dr. Sing-Young Chen, JDRF Canada Centre of Excellence at UBC
Dr. Chen’s work focuses on understanding sex differences in beta-cell resilience to stresses associated with T1D. In type 1 diabetes, the insulin-secreting beta-cells are subject to many stresses – for example, they are attacked by the immune system and there is a high demand for insulin. Pancreatic islets from females are more resilient to these stresses than islets from males and can survive to keep making insulin. Dr. Chen’s research seeks to understand and leverage these sex differences with a view to develop cell therapies that will thrive in a T1D environment.

JDRF Canada Emerging Clinician Research Award
Dr. Alanna Weisman
The JDRF Canada Emerging Clinician Research Award (ECRA) is designed to provide crucial support to investigators who are building a career in T1D-related clinical investigation. These early career awards support the development of the awardee’s independent research program.

Dr. Alanna Weisman is a clinician-scientist and endocrinologist at the Lejdrf-adership Sinai Centre for Diabetes in Toronto, Ontario and assistant professor at the University of Toronto. Dr. Weisman’s research focuses on the use of diabetes technology (such as insulin pumps and continuous/flash glucose monitors) across Canada. Her primary focus is examining the rates of diabetes technology use among people from historically marginalized communities and identifying barriers to use that can be addressed.

Dr. Diane Wherrett – accelerating screening for T1D prevention.
Dr. Diane Wherrett is a pediatric endocrinologist at SickKids, and a Professor at the University of Toronto. In 2023 she was awarded a $12 million award from JDRF and CIHR to lead CanScreenT1D – the Canada-wide T1D Screening Research Consortium.

She is also the Centre Director for the Canadian arm of TrialNet, an NIH-funded international research network focused on screening for T1D and delivering clinical trials of disease-modifying therapies.

Dr. Shazhan Amed – improvng equitable outcomes for children with type 1 diabetes.
Dr. Shazhan Amed is a pediatric doctor who works at BC Children’s Hospital in Vancouver. Her areas of care are children and youth with diabetes.

Her team is developing the CAnadian PediAtric diabetes ConsortIum (CAPACIty), a network of 15 childhood diabetes centers from across Canada, with the collaborative goal of developing a data registry that can be used to improve outcomes for all children with diabetes, particularly those from marginalized or lower-income communities.

Dr. Elizabeth Rideout is an associate professor at UBC. Dr. Rideout’s research investigates the effect of biological sex on metabolic genes and pathways. Her team will apply this work to T1D by examining how beta cell dysfunction differs between males and females during the progression of T1D. Her research will inform prevention and treatment strategies that account for the impact of biological sex.

Dr. Sonia Butalia is a clinician-scientist at the University of Calgary. Her JDRF-funded project focuses on the transition from pediatric to adult diabetes care, a particularly challenging time for many young people with T1D. Her team will implement a transition program across 5 sites in Alberta that uses non-medical transition coordinator and technology-based communications to improve the transition to adult care and associated mental health challenges.

Dr. Deborah Da Costa is an associate professor and psychologist at McGill University. She is leading a patient-oriented team to redesign a pregnancy and postpartum support program for people with T1D and T2D, and evaluate its impact on mental health outcomes, ultimately providing opportunities to improve quality of life for women with diabetes during an important life stage.

Dr. Holly Witteman is the Canada Research Chair in Human-Centred Digital Health and a professor at Université Laval. With an interdisciplinary background in human factors engineering and social sciences, she is developing CommuniT1D. This will be a virtual platform for peer information and connection in a small group format for people who have things in common. Holly has personally lived with T1D for over 40 years.

To read more about other JDRF-funded women researchers: www.jdrf.ca/research/meet-our-researchers/

JDRF Canada – an all-women research department.

Chief Scientific Officer Dr. Sarah Linklater, along with her team Dr. Lara Green, Dr. Anne Marie MacDonald and Katie Ryan, and use their science backgrounds and passion for research – that also may benefit other autoimmune diseases – to help JDRF select and accelerate the most promising T1D research in Canada.

Amanda Hailman oversees JDRF Canada’s Mental Health + Diabetes Strategy, which under her tenure, has overseen the launch of Diabetes + Mental Health Training Program for mental healthcare providers, the Diabetes + Mental Health Directory, a listing of these trained professionals, and the administration of community grants to support improved outcomes for people living with diabetes.

JDRF – A woman led organization

In late 2023 Jessica Diniz took on the role of President and CEO of JDRF Canada following the retirement of Dave Prowten. She ably stewards the organization by ensuring her staff are able to thrive and continue to support its mission of a world free from T1D.

In April 2023 Helena Gottschling was announced as Board Chair. Helena is committed to working with the Senior Leadership team and Board Directors to ensure JDRF Canada can deliver on our strategy, our mission, and our promise as an organization to our donors, supporters, staff and all Canadians affected by T1D, as we work towards a world free from type 1 diabetes.

JDRF Canada is proud as well to have both senior leadership and management teams that more than achieve gender parity, skewing heavily female. While acknowledging there is always more work to be done, the organization is proud to be living the IWD theme for 2024.

And JDRF Canada is so grateful to all the women who drive change, progress and change the realities of those living with T1D and for their efforts to bring us ever closer to our ultimate goal of cures for T1D.

Living with type 1 diabetes (T1D) is 24/7. Every day you must make decisions around meals, exercise, rest and more. It is the only condition that requires a daily manual replacement of the function of an organ, which is done through administration of insulin.

An often-overlooked aspect of living with T1D is how this can train a person to be compliant. Learning how to manage injections, finger pricks, frequent medical appointments, and interventions, (particularly if you are diagnosed as a child and your parents asked healthcare providers questions on your behalf) can result in a lifelong challenge of expressing your needs due to this learned compliance. This is particularly an issue if you become reluctant to express your needs to your healthcare team, out of fear of seeming less ‘compliant’ with your diabetes management.

Open communication related to your health is essential to getting the treatment you need. Learning the skills needed for open communication are essential to advocating for yourself with your healthcare providers and thereby being able to best manage your T1D. But learning how to do this without shame or feeling like you are ‘burdening’ your diabetes healthcare team can be hard.

But if you don’t feel comfortable bringing up concerns with your healthcare providers, you could potentially develop diabetes complications that will go unaddressed or even undiagnosed. This is especially true for people with T1D and feelings of guilt, shame and distress that can come around disease management, known as ‘diabetes distress’.

A person with T1D could eat exactly the same meal at the same time, administer the exact same amount of insulin, do the exact same amount of activity, and get the same amount of sleep and have wildly varying blood glucose levels day to day. So many factors combine, such as stress, hormone levels, potential illnesses like a cold – but even knowing this intellectually doesn’t necessarily prevent a person from feeling emotionally like they are ‘failing’ in their T1D management.

Preparing yourself ahead of your doctor’s appointments and reminding yourself that your needs are as important as any of their other patients, and that your healthcare provider wants the best for you will help you go into appointments more confident to advocate for yourself.

Articulating your needs might feel awkward, particularly if you were used to your parents doing this on your behalf, or you don’t feel like you have a right to take up too much of your doctor’s time. Practicing ahead of time, or even writing a checklist of items to discuss and sending these to your healthcare provider ahead of time could make you feel better prepared to cover all your concerns during the appointment.

Remember that your doctor can’t know your needs unless you properly and thoroughly communicate them. And every patient is an individual, and what works for one person with T1D may not work for you. Ensuring your healthcare provider has all the available information can better allow them to tailor a care plan specific to your needs.

By learning how to advocate for yourself and being willing to have open conversations – you will create a more transparent and progressive relationship with your healthcare provider which should lead to future discussions becoming easier for you.

Another often overlooked aspect of T1D care is mental health. In addition to the constant physical management required to live with the condition, diabetes carries with it a significant psychosocial burden and a greater risk of mental health disorders including anxiety, depression, and eating disorders. It can be challenging to discuss this with your healthcare provider. Unfortunately, while we have come a long way to being more open about mental health, there still exists some stigma and shame around having mental health challenges. However, it is known that mental health can directly affect blood glucose levels and T1D management.

Learning to be open with your diabetes care team about your physical needs will ideally make it easier to also discuss any emotional issues, and to determine whether further care and interventions are needed.

When to ask for support

If your diabetes management is off track, ask for support. You may need a treatment change, or outside stressors like work or relationship challenges might be affecting you more than you realize. Feeling empowered to have frank and honest conversations with your healthcare provider will better help you know when further support in the form of a mental healthcare specialist is needed.

It may be useful to take a step back to determine what the problems are and get support. Talking to other people who understand is very important. JDRF has resources to help connect you to others in the T1D community or a mental health provider.

To better help address some of the many gaps in mental health support for people with diabetes, in 2021, JDRF Canada launched a Mental Health Strategy to fund research, train mental health providers, and engage and educate healthcare providers and the type 1 diabetes community on mental health.

The Mental Health + Diabetes Training Program, designed and implemented by JDRF Canada in collaboration with Diabetes Canada, is helping to fill this gap in Canadian health systems, along with Mental Health + Diabetes Directory. The Directory is intended to act as a connection tool, to provide people living with or affected by diabetes with access to information about registered mental health providers who have engaged in additional training to provide mental health support specific to addressing the realities of living with diabetes.

Your health matters. Your needs matter. A good healthcare provider recognizes this and will encourage free and open communication. Self-advocacy isn’t linear. Some days you won’t feel as confident, and you might feel anxious before seeing your healthcare provider. This is completely normal. Just keep the lines of communication open and always remember that your health is as important as any other person or patient.

My parents were one of the original families that brought JDRF to Canada. I was 13 years old in 1971 when my brother David was diagnosed with type 1 diabetes (T1D), and I was diagnosed at 15 years of age. My parents felt there wasn’t enough going on at the time regarding T1D research. It was hard to even get information on what T1D even was – it was called the ‘sugar disease’ in the encyclopedia. When my brother David was diagnosed he went to the hospital, I thought he was going to die. He became a functioning diabetic and the whole family got behind him. So, when I was diagnosed, mine was caught very early. I was able to diagnose myself on his urine test strip. I went to the hospital and was formally diagnosed and went on injection (insulin) immediately.

My parents made it so that we had to figure out how to manage our diabetes day-to-day and live our lives. We played sports, hockey, soccer etc. It was never an issue that we wouldn’t be as active as possible, while still being very aware of our own bodies and our diabetes management.

While this was going on, our parents were working behind the scenes to raise money and awareness for T1D cures.

I know that they never believed that 50 years later, we would still be struggling to find a cure. The management has improved, the technology has improved, but we are still looking for the cure.

Gerald Josephson and Mitch Garfinkle met with JDRF volunteers in NYC, and then brought JDRF to Montreal, in 1974, then the Shiff family and the Oelbaums in Toronto a few years later. These initial families, including mine – were all about the cure. Whatever money was raised would go to research labs to help find the cure. Every decade since, there has been a lot of hope, a lot of progress, but still not a cure. Still, I believe still that there will be a cure for diabetes. I know there will be.

Can you share what T1D management was like 50 years ago?

I’ve seen everything since the early 1970s: MDI (multiple daily injections), slow acting, fast acting (insulins), we were weighing food at the restaurants as kids. We got rid of Frosted Flakes and ate Special K, and this was a complete contribution as a family. We all changed our diets and eating habits. There was little official guidance to follow. Being social as teenagers wasn’t the easiest, but my parents were insistent that we didn’t whine and complain but make it work, so we were open as a community. My friends all knew what we knew as diabetics, they knew how to help with lows (low blood glucose), there was always a glass of juice available.

I was patient #20 with a (insulin) pump when I was 21. I was the first outpatient of Dr. Elissa Schiffman from the Montreal Children’s Hospital. The size of the pump was thick and about the size of a tablet, I wore it under my shirt, but it was a continuous infusion. I would give myself boluses (short-acting insulin that you get at mealtimes) before eating. But it gave me the freedom to manage my lifestyle while managing my diabetes in a better way for myself. The pump gave me freedom to eat when I wanted, and this was a game changer for me. Not having to eat on a regimented schedule every day made a huge difference. It was a huge plus for me. I was monitored, but it essentially acted the same as a pump today, just bigger and with slightly less functionality.

I’ve been on a continuous glucose monitor, which is also a big change. This lets you know where you are (blood glucose levels) throughout the day. You know the direction your sugar levels are going, high or low. You still must be involved and watch them; you can’t stop paying attention. But the highs and lows are so much more manageable and (the CGM) allows you to live with more confidence and it makes management a lot easier.

My son was diagnosed at 9 years old, and he’s now 35 years old. My son being diagnosed was the most painful experience for me. Like my brother and me, he must live as normal a life as possible, we make it work as a family. I know where his gene came from, I have guilt because of what he has to deal with as someone with T1D. One thing I want people to understand is that it’s not only ‘diabetes’, it’s not only managing your blood glucose and insulin. It’s a serious, degenerative disease with risk of significant complications. But the hope is always there that it will be cured in my lifetime.

What innovation or research update has excited you the most as someone with T1D?

Being more able to follow what’s happening in research, you can go online and get up-to-date information on new approaches and management. But arguably, we are not that much further ahead. I went from urine sampling, to testing, to blood glucose testing, and you can adapt quicker. These are tweaks though; the disease is still the same just better managed with technology.

I’m a little bit frustrated that although the reality of where we are is better, I am impatient. I am hoping that the stem cell technology discovered in the 90s will make a much more significant impact. Today’s T1D research has a lot of things that are branched out into other areas, like mental health, and other fields, this is all great – but there are no changes that have helped me personally, in that I still have type 1 diabetes.

We must give people hope. A person with T1D today can live quite a normal life. With continuing technology and science, this will continue to make the life of a diabetic easier and more like that of other healthy individuals.

What would a cure look like to you?

No more testing, no need for insulin. I could live with that. I would like to wake up in the morning and not worry about where my glucose levels are, and not have to ask myself: do I need to eat, or not eat, or take more or less insulin.

To be able to eat a meal without calculating the carbs would be freedom. The day-to-day is not that hard for me anymore, but I worry about the long-term effects as I age. I don’t want to worry about longevity or long-term complications. I want to enjoy my life actively as I have. I do live every day like I don’t know what tomorrow will bring. We can only control today.

For most of us, living with T1D is not such a bad thing, we learn to manage the best we can but I feel sad when I hear of others who are diagnosed. So, if we can inoculate (against it as a form of prevention), that would be OK for me. I wouldn’t get a cure, but it would mean nobody else would ever have to live with T1D.

I’ve been very lucky. I have terrific support, my wife, kids, friends. I just wish they could be supporting me for other reasons other than T1D.

What has JDRF meant to you and your family?

In different areas, different emotions. The idea of a family of people within the JDRF organization working towards a common goal – a cure – is meaningful to me. It’s been very emotional. The people who I met when I was younger taught me that I had to become somewhat more responsible and mature as a teenager living with T1D. So having that support was terrific, and I want to do the same for others. I’m not looking for a thank you of any kind, just the ability to help others that find themselves with diabetes and are looking for a cure.

I really, truly just want a normal life. So that I don’t have to deal with diabetes. That is my hope for the future. If it’s an implant, or injection, whatever it is – I’ll take it and I go back to how I was before diabetes. Realistically, I don’t know what the future holds for me, but hoping is good. Hope is powerful. We will continue our fight to find a cure!

JDRF Canada is so grateful to Jimmy Garfinkle for his most recent contribution, matching donations for our Spring Flash Campaign in March, up to $50,000 to support T1D research.

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An often under looked aspect of living with a chronic condition like type 1 diabetes (T1D) is the stigma that can accompany it. Generally, diabetes stigma can be defined as negative perceptions, judgment, discrimination, or a prejudice against someone because of their diabetes. The majority of T1D stigma derives from a lack of understanding of the disease itself, and a belief that lifestyle factors such as diet or lack of exercise – or eating too much sugar ‘caused it’.  

T1D is an autoimmune disease that cannot be prevented, but there remains a belief among many that simply changing habits can reverse or ‘cure’ T1D. And it can be exhausting for someone with T1D to have to repeatedly explain the mechanisms of their condition or experience undue attention on their diet, exercise habits and overall health and lifestyle.

Over the long-term, diabetes stigma and discrimination can affect T1D management and self-esteem, to the point that it may lead to hiding visible cues of their condition, such as covering up diabetes devices like advanced glucose monitors, or pumps, performing less frequent checking of blood glucose levels, or injecting insulin in private to avoid being seen as having a chronic disease. It may even cause someone to avoid seeking healthcare when needed, which could lead to potential diabetes-related complications.
Experiencing this type of stigma can have implications both internally and externally. Absorbing the negative perceptions that come from diabetes stigma can lead to feelings of shame, failure and guilt. This can impact familial relationships, the workplace, relationships with friends and mental health.

“Sometimes, being open about my T1D can be challenging because I never know what preconceptions or assumptions others may have. More than once, people have asked me, “Should you be eating that?” or “You must have been overweight before your diagnosis?” These negative experiences often create a barrier to disclosing my disease and make me hesitant to share my journey with T1D for fear of being ridiculed, ostracized or shut down. But I do my best not to internalize ignorant comments and instead try to use them to educate on what life with T1D is really like! “- Lauren (29-years-old, diagnosed age 11)

Many teens and young adults with type 1 diabetes have acknowledged experiencing diabetes stigma and that it resulted in them taking less good care of their health, according to a Research Institute of the McGill University Health Centre in Montreal study from 2019, which included 380 participants found via the social media channels of Diabetes Canada (which also supported the study), as well as diabetes clinics and organizations across the country.

During the study, (380 participants) between the ages of 14 and 24 completed an online survey that asked whether they told others they had diabetes, and whether they dealt with their diabetes care (or felt embarrassed about doing so) when with friends and other people.

Two-thirds had felt embarrassed about their diabetes and were more likely to have poor blood glucose control than the one-third who did not experience stigma. Over the previous year, this larger group was also more likely to have had either one or more events of dangerously low blood sugar that required help from another person, or an A1C level above 9% (A1C is a measure of average blood glucose levels over the last two or three months; the target for most people with diabetes is 7% or less.) The study, which was published in the Journal of Medical Internet Research, also found that feelings of stigma were slightly more common among females (68%) than males (59%).

“I found it hard at times to be open about living with T1D in work and school settings because of how many misconceptions are out there about this disease. Multiple teachers and coworkers often took an infantilizing approach after I shared my diagnosis with them, often telling me what I should and shouldn’t be eating and different ways I should be living my life according to their preconceived notions about T1D. Although these situations are hard to respond to, I try to take the opportunity to educate and not take these comments personally!” – Alicia (25-years-old, diagnosed age 7)

Unlike most chronic conditions, T1D is nearly completely self-managed. Diabetes distress, the feelings of frustration, guilt, shame and worry – (what some people with T1D experience when they’re overwhelmed by the relentlessness of diabetes) can be exacerbated by external diabetes stigma. And diabetes distress can lead to diabetes burnout, and a reluctance to manage the condition.

Diabetes stigma can particularly affect people who have diabetes and struggle with maintaining a weight that is comfortable for them. Blaming or shaming someone with diabetes, particularly by watching or commenting on what they eat, or how much activity they are doing, could lead to disordered eating or resistance to discussing changes in diet and blood glucose levels with healthcare providers.

 “Although doctors are the ones who should help you the most with your T1D, they can often be the ones inflicting blame and shame if they don’t like the numbers they’re seeing at your appointments or feel that your HbA1c/time in range should be lower. I struggled with that until I found a more supportive endocrinologist and started seeing a psychotherapist living with T1D. I’ve learned that the best way to combat these feelings is to be more self-compassionate and remind myself that no matter what my blood sugars are doing, as long as I am trying my best, it’s enough!” Lauren (29-years-old, diagnosed age 11)

Although I love being open about T1D and the challenges that come along with it, it is hard to be vulnerable sometimes as there is still so much misinformation and misconceptions out there about this disease. I have had multiple people react in shock when I share that I am diabetic as they say, “but you aren’t fat!” Responses like this perpetuate the wrong idea of what T1D is supposed to look like or what a person living with T1D should look like. Although comments like this can be hard to respond to, I do my best not to internalize them and always try to take an empathetic and educational approach in my response. I truly believe most people mean well, they just aren’t always knowledgeable about the nuances of T1D.” Alicia (25-years-old, diagnosed age 7)

How people think and talk about T1D, including healthcare providers, colleagues, loved ones and friends is essential to improving health outcomes for people with the condition, and to reducing the negative perceptions and judgement surrounding it. Having good support and people willing to listen and learn is key to reducing diabetes stigma and empowering people to feel open and comfortable sharing about what it’s like to live with T1D.

Finding a community of people also living with T1D can help. JDRF Canada offers connection and support through its volunteer and community engagement program. Learn more about community resources and volunteer opportunities that connect the T1D community.

Most importantly, there is never shame in having type 1 diabetes. You may need to be prepared to educate others or correct common misconceptions. But be proud of who you are and acknowledge to yourself daily that you are doing your best, and that is all that can be asked of you.

Additional Resources:
The End Diabetes Stigma: https://enddiabetesstigma.org/

 https://jdrf.ca/life-with-t1d/mental-health/free-mental-health-resources/

https://directory.jdrf.ca

People living with type 1 diabetes (T1D) are more likely to experience mental health challenges compared to those without diabetes. This includes disordered eating and eating disorders: those with T1D are 3-4 times more likely to experience these conditions.

Eating disorders include anorexia, bulimia, binge eating disorders, and insulin omission or restriction to lose weight, commonly referred to as “diabulimia.” Eating disorders are serious in any individual but are particularly dangerous to people living with T1D. In particular, insulin omission can induce hyperglycemia or diabetic ketoacidosis (DKA) (dangerously high blood glucose levels), which can be very dangerous, in some cases leading to severe diabetes related complications, coma, or death.

The close relationship and strict monitoring of food, such as carbohydrate counting, required as part of T1D management can cause stress that may increase the tendency to develop eating disorders in people with T1D. As well, existing treatments for eating disorders may not be ideally suited for people living with T1D, as there are many special considerations, such as the fact that starting or changing insulin treatment can result in weight gain. Accompanying this, there are often feelings of guilt and shame associated with living with a condition that requires careful self-management, and people living with T1D are further at a greater risk of experiencing depression, anxiety, and diabetes distress – a clinical condition that refers to the negative emotions that comes with the burden of diabetes self-management. Although nearly 1 in 5 children with T1D show signs of disordered eating, the signs are often missed.

On January 23, 2024, a Parliamentary Inquiry report in the United Kingdom on the risks of type 1 diabetes eating disorders (T1DE) was released, chaired by Global Health Ambassador The Right Honourable Theresa May MP and The Right Honourable Sir George Howarth MP, both who have a personal connection to T1D.

The parliamentary inquiry, funded with support from JDRF International, identified several systemic gaps and barriers that fail to provide effective support and care for people affected by T1DE (type 1 diabetes specific eating disorders). This includes gaps in diagnostic criteria and terminology for T1DE, the effect of stigma, limited research and evidence in this area, lack of knowledge and training of healthcare professionals, and lack of funding and access to mental health providers and eating disorder support services. There are clearly many areas that must be addressed to improve the experiences of people who are affected by T1DE.

A clear finding from the report is the need for integrated mental health support into diabetes care, with a recommendation to introduce mental health checks along with the existing physical health checks and screening during annual diabetes care appointments, and a need for mental health providers to have training on diabetes and T1DE. People living with T1DE often receive mixed messages and advice from different care providers with conflicting care plans. This latter finding suggests a need for greater communication, collaboration, and integration of different health services within health systems.

Sara, who lives with type 1 diabetes and T1DE, in the Parliamentary Inquiry report shared:

“I was diagnosed with type 1 diabetes at the age of three in 1990 and have had no psychological support in those 32 years. The expectation of how I was supposed to control my diabetes was so high from other people it was unachievable and unrealistic. I couldn’t reach perfect, so the only thing I felt I could achieve was being uncontrolled, so I developed an eating disorder and that became a coping mechanism. My first signs of T1DE were in year eight of secondary school, where I started omitting insulin, and things got worse after leaving pediatric care, as I struggled with bulimia as many as four times a day. I would hide how I felt but underneath my smile I hated myself, my body and the stress that my type 1 diabetes caused my loved ones. By omitting insulin, I could numb the relentless burnout that managing type 1 diabetes brought. I could also eat any food I wanted, and without taking insulin, I would lose instead of gain weight.”

As research is lacking in this area, JDRF International has identified T1D and eating disorders as a key priority and are currently funding three projects to support this. These projects will explore innovative interventions, testing the efficacy of an Acceptance and Commitment Therapy (ACT) intervention delivered via a mobile app, a guide for healthcare providers to see warning signs of eating disorders, and a virtual eating disorder prevention program. This research will support reducing gaps in evidence and interventions for people affected by T1DE.

What can we learn from this report?

• Greater investment in research in the area of T1D and disordered eating is needed to generate evidence-based best practices
• Evidence needs to be integrated into practice – this means training our health teams to recognize early signs of T1DE and explore prevention initiatives
• There is an opportunity for greater collaboration and communication among healthcare providers and care teams to improve patient care
• Funding in mental health is sorely needed to allow people living with T1D the ability to have improved access to mental health treatment
• Greater awareness of T1DE and the experience of stigma in diabetes and eating disorders must be addressed

What does this mean for Canadians with T1D?

Since JDRF Canada launched its mental health strategy in late 2021, we have been working to close gaps in mental health and T1D by creating the Mental Health + Diabetes Training Program to train mental health providers to have a greater understanding of diabetes, and recognize the need to further support eating disorders in this area. In late 2023, we co-hosted a webinar with the National Eating Disorder Information Centre (NEDIC) to introduce this important topic to healthcare professionals.

The Parliamentary Report recognizes the important role that peer support can play in treatment and recovery of T1DE, and “recommends the availability of in-person and online moderated peer support”. JDRF Canada is currently funding research in mental health and some studies are working to address the vulnerable years of transitioning from pediatric to adult care. These research projects are exploring peer support as a mechanism of reducing the feelings of isolation that often arise from living with a chronic condition, and to explore what impact that may have on mental health and diabetes related distress. As the risk of developing eating disorders is especially high during teenage years, it is vital that positive emotional and social support are made available during this time.

If you live with T1D, or have a loved one who does, and are struggling with disordered eating, or are restricting insulin to manage your weight, know that you are not alone, and reach out to your diabetes care team or someone else you trust. Help is available. Finding a mental health provider that is knowledgeable about diabetes can also help.

Supports and Resources

• To connect with a mental health provider, visit our Mental Health + Diabetes Directory
• For support with eating disorders, visit the National Eating Disorder Information Centre (NEDIC) or access their provider directory (English only).
• For Quebec residents, you can visit Anorexia and Bulimia Quebec (ANEB), access the Montreal based Douglas Institute Eating Disorders Program or BACA Eating Disorders Clinic
• For more information on mental health and diabetes, including eating disorders, learn more at JDRF Canada
• BETTER also has information related to T1D and eating disorders
• If you are a healthcare provider that wants to learn more about mental health and diabetes, including eating disorders, click here

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Hi, I’m Joanna! Born and raised in Ottawa, I now call Toronto my home. I’m passionate about health and fitness, PR/communications, all things food, travel and family!

When were you diagnosed with type 1 diabetes, and can you share a little about what that was like?

On March 16, 1998, I vividly remember looking down at my bruised arms where two IVs dripped into my veins to help bring my blood glucose levels back into a normal range. Nearby machines beeped relentlessly. Doctors and nurses gathered around. I had been rushed to the hospital ER from a family vacation, where I was immediately diagnosed with type 1 diabetes (T1D). I was also told we were lucky we came when we did. It was a moment that will be ingrained in my memory forever.

Over the next week, the hospital became my home—as well as my family’s—where we learned how to manage my newly diagnosed condition. Those early days laid the foundation for my journey with T1D, teaching me that while diabetes is a part of me, it doesn’t define me.

How has fitness impacted your daily management?

Being active and incorporating fitness into my life has been a game-changer for my overall T1D management. The routine of exercise—the planning, the commitment, the follow-through—it all strengthens my resolve to manage my T1D with intention. With every movement, I’m reinforcing habits that keep me on track: monitoring my blood levels, adjusting insulin, being mindful of my eating.

But it’s more than that. It’s about the mornings I wake up feeling unstoppable and the evenings I go to bed knowing I’ve done something good for myself. This positive feeling spills over into other areas of my life, making me a more focused, more present individual. In a way, managing T1D with the help of fitness is one of the best ways to take care of myself.

Can you share what has impacted your daily management the most?

Honestly, my daily management got a lot brighter when I started using a continuous glucose monitor. I can see what’s happening with my blood glucose levels in real time, and it means I can live my life with a lot less stress about my diabetes. I’m forever grateful for the advancements in diabetes technology—it’s come a long way since my diagnosis.

(Learn more about JDRF’s advocacy program to ensure universal access to diabetes devices like advanced glucose monitors here: https://www.jdrf.ca/advocacy/access-for-all/)

Why is supporting the T1D community so important to you?

There’s something profoundly human about being part of the T1D community. It’s a place of courage, resilience, and an unspoken understanding that we’re all in this together. Living with T1D can be isolating, as I quickly learned after my diagnosis. As soon as I found a support system, my life, and my outlook living with T1D completely changed. It’s a community of hearts and hands ready to catch you, lift you, and celebrate with you. That’s what being part of the T1D tribe is all about and I want to give back to this incredible community as much as I can.

Anything else you would like to share with the T1D community?

At the end of the day, T1D has been my greatest teacher in life. Living with this chronic condition for 26 years has taught me to listen to my body better than ever before, it’s encouraged me to be patient—especially on the tough days, and it’s proven that I’m strong and can conquer anything, even when people have doubted me. I’ve completed several triathlons and cycling races, have traveled solo overseas numerous times and have lived and worked abroad. Accomplishing these goals, and many more, has proven that nothing’s off limits.

My advice to those living with T1D: Your T1D has shaped your life, and, it has inevitably developed your resilience, sense of independence and confidence along the way. Don’t let it prevent you from living life on your terms. With the right attitude, you can conquer anything you put your mind to.

You can follow Joanna on her Instagram page here: https://www.instagram.com/joannamariefit/

Learn more about JDRF’s support services to connect the T1D community: https://www.jdrf.ca/support

People who live with diabetes are at an increased risk of mental health conditions such as anxiety, depression, eating disorders and diabetes distress (the feelings of stress, guilt and being overwhelmed that can result from diabetes management). There are diverse mental health needs across the type 1 diabetes (T1D) community in Canada, and a common theme among members is that greater mental health supports are needed. This need varies widely, from dealing with feelings of being overwhelmed when newly diagnosed, to battling the loneliness and isolation that may come from living with a chronic condition for years, and that it can feel like no one understands.

As part of JDRF Canada’s Mental Health Strategy for T1D launched in 2021 and a key fundraising pillar of the $100M Campaign to Accelerate, in May 2023 we opened the JDRF Canada Mental Health and T1D Community Grants Program as a new funding opportunity. This incubator initiative is designed to provide seed funding to organizations ready to transform innovative ideas into successful projects to support the mental health and wellness of the T1D community.

We received many excellent applications and are grateful to our diverse review panel made up of Canadians with lived and/or professional experience of T1D who helped decide which projects were to be funded. These projects, awarded up to $20,000 each will take place over an 18-month period. Each is unique, offering creative and interactive ways to improve mental wellness among the T1D community.

Partnerships are a crucial component of JDRF Canada’s Mental Health Strategy, and we are proud to be partnering with a variety of organizations across Canada to support these new community projects, and expand the capacity and diversity of supports for mental health and well-being in the T1D community.

“Mental wellness is central to living well with T1D, but we hear from our community time and time again that there is just not enough support for mental health and diabetes within or outside of the health care system,” said Jessica Diniz, President & CEO of JDRF Canada. “Each of these important new projects is a shining example of much-needed support for the T1D community, and we are excited to be enabling them as part of JDRF Canada’s goal to connect more people with the supports they need for improved mental health and wellness. By working as partners with other like-minded organizations, we can reduce duplication and achieve more for the T1D community.”

Bridging the Gap: Mental Health Integration into 2024’s Slipstream Programming​

Connected in Motion (ON)​

An established and well-respected diabetes camp for adults will add mental health programming to their traditional weekend offerings of outdoor pursuits and workshops on adult-life with T1D held in different locations across Canada. The project will create expert-led workshops as well as tools and resources for participants. Workshops and resources will cover a range of topics relevant to adults living with T1D, including body image, aging, and the impacts of the condition on relationships and family dynamics.

CuriosiT1D: Getting Curious about Diabetes & Mental Health

Edmonton Diabetes & High Risk Foot Clinic partnered with Pineapple Therapy (AB)​

This project will develop an 8-week psychoeducation course to teach people living with T1D about the intersection between their condition and their mental well-being. The self-paced course is based on the practices of Acceptance and Commitment Therapy (ACT). Participants will build skills to increase resilience, reduce anxiety, and better manage their condition with self-compassion.

OPEN – D: Onboarding Platform for the Education of New patients with Diabetes

McGill University partnered with GoldBug Interactive (QC)​

Creation of a bilingual (French/English) webcomic for newly diagnosed children designed to be an engaging resource for kids aged 7-12 adjusting to life with T1D. The webcomic will cover topics including managing the routines of diabetes care, talking about your diabetes with classmates, and will also demonstrate healthy coping skills for managing the ‘big feelings’ that come with T1D.

« Bien dans ma tête et mon diabète »​

Université de Montréal (QC)​

This project will produce a collection of short format French videos for Youtube, Instagram, and Tiktok that combat stigma around mental health and T1D while also sharing reliable information and resources for those managing their own health. Videos will be fact-checked by experts (mental health professionals, doctors, and people living with T1D) to prevent misinformation or biases often found in similar formats.

Enhancing Resiliency for Families Living with T1D through Empowering Mental Health Program​

Langs Community Health Centre (ON)​

A community health hub will be developed to include a variety of in-person programming to address the psychosocial needs of a recent influx of people with T1D in their care​. The project will expand their Diabetes Education Program to cover mental health and well-being supports through educational workshops, peer support, and facilitated group activities to foster self-efficacy for tweens through adults.

If you are interested in learning how to support these projects, or JDRF Canada’s Mental Health Strategy, please contact Jen Bavli at jbavli@jdrf.ca.

For questions about the Mental Health and T1D Community Grants Program, please contact grants@jdrf.ca.

Learn more about our Mental Health Strategy and mental health research projects.

If 2022 was a year of hope, 2023 was one of turning that hope into progress. And thanks to our incredible community of donors, volunteers, and supporters – we saw significant progress across all areas of type 1 diabetes (T1D) research and developed an even closer relationship with the amazing T1D community.   

From the generosity of our donors, JDRF Canada had another transformative year– dedicating substantive funding to research, strengthening our partnerships in academia, continuing to support newly diagnosed families, while never losing focus on our goal of finding cures for T1D while improving the lives of people affected by the disease today. 

Highlights from the past year included: 

• Launching our Mental Health + Diabetes Training Course and Directory in collaboration with Diabetes Canada  
• Building capacity for the future of T1D research in Canada through training the next generation of researchers and clinicians 
• Improved device coverage in New Brunswick, Manitoba and British Columbia through our Access For All advocacy program 
• Advocacy campaigns in Alberta and Nova Scotia for improved access to diabetes technologies like advanced glucose monitors and insulin pumps 
• Reaching thousands of Canadians through our Let’s Talk T1D Education Series, bringing experts into their homes to discuss topics important to them 
• Continued support to newly diagnosed families and adults through our Bag of Hope and No Limits Care Kit programs 
• Bringing our community together at our Walk, Ride, JDRF Golf Marathon and Cocktails for a Cure and Light the Way Soiree events 
• Continued progress with our $100 Million Campaign to Accelerate 
• The T1D Superhero Card campaignlaunched, a unique tool that allowed us to spotlight the T1D superheroes among us through National Diabetes Awareness Month 
• Welcoming our new Board Chair Helena Gottschling 
• Announcing the retirement of Dave Prowten, who provided a decade of leadership as CEO and President and the appointment of Jessica Diniz as his predecessorwho will ably take the reins and continue to steward JDRF Canada’s strategic vision with the care our community has come to expect  

T1D research highlights 

In Cell Replacement: 

• JDRF Canada and Stem Cell Network announced the second recipient of the J. Andrew McKee Fellowship in Type 1 Diabetes with a third fellowship opportunity launched 
• JDRF Centre of Excellence at UBC marks two years of innovation in type 1 diabetes cure research 
• Ontario life sciences startup, Allarta, receives award from JDRF International to advance its work in creating a functional cure for type 1 diabetes 
• New developments in islet cell therapies for type 1 diabetes 
• Exciting updates from Vertex stem cell-based therapy clinical trials 

In Disease-Modifying Therapies: 

• Teplizumab, which was approved by the FDA in the USA in late 2022 (under the name Tzield) was shown to also delay disease progression in youth aged 8-17 years old in stage 3 T1D. 
• Additional funding support towards Zucara, a once-daily drug that may help prevent hypoglycemic episodes in people with T1D 
• New once-daily insulin treatment a possibility 

In Treatments to Improve Lives: 

• The JDRF-CIHR Partnership to Defeat Diabetes announcement of 4 new grants in Precision Medicine, the goal of which is to get the right treatment to the right person at the right time. 
• Funding programs devoted to improving mental health care and outcomes for people with T1D, including the CIHR-JDRF Mental Health grants 

In Screening: 

• In collaboration with CIHR, JDRF announced the development of CanScreen, a new Canadian T1D screening consortium led by Dr. Diane Wherrett.  
• JDRF continues to help facilitate screening for relatives of those with T1D at Sick Kids Hospital via TrialNet 

In Clinical Trials: 

• A renewed focus on helping raise awareness of the importance of clinical trials for moving forward critical T1D research, through a social media campaign and new webpage 
• A new tool to make finding T1D clinical trials recruiting in Canada easier and simpler – due to launch early 2024. 

To read more about research updates, please visit www.jdrf.ca/blog. 

2023 was truly a year of incredible progress and momentum both in type 1 diabetes research and at JDRF. As we head into 2024 and the 50^th anniversary of JDRF Canada, we reflect on how none of this would be possible without the support of our donors, volunteers and the incredible T1D community. Thank you! We truly believe that a world free from T1D is closer than ever. 

Dear Friends, 

As I write this, my heart is overflowing with gratitude.  Today, I am retiring from JDRF and it has been an incredible honour and privilege to be the President and CEO for over 10 years. I feel fortunate to have met so many fantastic people in the type 1 diabetes community – your passion, commitment and perseverance each and every day is inspiring. Thank you! 

I have many great memories, and one that stands out is from a Kids for a Cure event in Ottawa. I remember that we gave the kids a JDRF hockey jersey to wear in their meetings. When I put mine on, it made me feel so proud.  I was proud to be part of a winning team – a team that digs deep each and every day to make lives better for everyone in the T1D family.  And of course, seeing all of these incredible youth champions tell their stories to MPs and Senators is the BEST!   

Another (humbling) highlight occurred in my first few months. We had secured an interview on a national TV morning show during Diabetes Awareness month, and we were going to discuss the many advances that have been made.   

We had all sorts of items – needles that were massive, to the latest pumps and monitors. For me, it was all very new and I had done lots of preparation to do my best to explain it. I was joined by a young boy named Anwar – he was one of the nicest and cutest kids I had ever met. After the interview, a good friend of mine who worked at the TV station came up to me and said I had done fine. Then he paused, looked me in the eye, and said, but Anwar stole the show!  It showed me how important and impactful it is to share your personal stories to bring this relentless condition to life and that our ability to work as a team makes us unstoppable. 

I often used the word “momentum” with our team. I believe it is important to build and keep momentum as an organization and this can happen in many ways – research breakthroughs, fundraising success, wins with governments. 

As a team of staff and volunteers, our momentum is like a snowball that starts rolling down a hill, getting faster and bigger. During my tenure, while several areas have tremendous momentum, I am so excited by the progress we have seen in research.  I remember when the first cell therapy trial was announced by ViaCyte several years ago, and now, there are so many trials and companies involved, and of course, amazing Canadian researchers continue to make global contributions in this area. With a disease modifying therapy, like TZield that can delay the onset of T1D, approved by the FDA, I am extremely encouraged that the next generation of treatments, that will move beyond insulin and give people freedom from T1D are incredibly close.   

I need to thank many wonderful people for making these 10 years the most rewarding and fulfilling part of my career. Thank you to the amazing JDRF team, in Canada and globally, for leaning in every day to make a difference; to our volunteers that multiply our efforts and are our secret weapon; to our Board for their leadership, guidance and trust. Our donors are incredible, fueling the best research in Canada and around the world.  To our partners, thank you for being so collaborative since making lives better and finding cures requires all of us to work in harmony. There is no doubt that together, we are stronger and more impactful! 

As I depart, I want to wish Jessica Diniz, tremendous success as the baton is officially passed to her. You will be a terrific leader! 

So let me conclude where I began.  Thank YOU for allowing me to be part of this incredible JDRF team and T1D community. You inspire me, and I know we are well on the way to turning type one to type none.