The BETTER project: JDRF reaffirms its commitment to enhancing the quality of life for individuals with type 1 diabetes

The BETTER project, a Canadian research initiative, gets a boost from renewed JDRF funding. Bringing together patient partners – people living, or with a child living, with type 1 diabetes (T1D) – researchers, healthcare professionals and policymakers, this project aims to improve the lives of people living by T1D in Canada.

Initially funded by the Canadian Institutes of Health Research (CIHR) and JDRF until 2024, the BETTER project has received extended support from JDRF for an additional three years. This renewed funding acknowledges the project’s significant impact, and will enable the team to continue advancing research and innovation in the field of T1D.

In addition to this charitable monetary support, the project also benefits from donations from both industry and individuals, which provides a solid foundation for achieving its ambitious goals.

What is the BETTER project?

The BETTER research project stands out by the involvement of people living with T1D. By working closely with patient partners, the BETTER team members actively integrate the perspectives and needs of these individuals into all facets of their work related to T1D. This approach ensures that the project remains grounded in the lived experiences of those directly affected by T1D, and enables efforts to be directed towards truly effective and relevant solutions in order to improve care and optimize the use of treatments and technologies.  

The project has 2 main focuses:

  • A Canadian registry of people living with T1D, called the BETTER registry, in which people living with T1D (or LADA for Latent Autoimmune Diabetes in Adults) – or who have a child living with T1D – can share their experience through online questionnaires in order to enrich research and knowledge about T1D. 
  • An online self-training platform, called Support, offering easy access to educational resources and practical tools to better manage T1D on a daily basis.

In addition to these main fields of activity, the project also undertakes clinical research and has setup a biobank (a collection of human biological samples and clinical data used for medical research) to further knowledge about T1D.

A success story

Since its launch in 2019, the project has achieved several significant successes. 

The registry currently has over 4,200 participants nationwide, providing valuable data to inform the scientific community and policymakers about the realities of T1D and its critical needs (e.g., the need for improved access to treatments and technologies). The data collected to date has enabled over 14 studies to be carried out to better understand the reality of T1D, exploring aspects such as the impact of socio-economic status, the burden of hypoglycemia, the use of technologies, and the stigma associated with this condition, to name but a few.

The Support platform has evolved over time to provide a content and a navigation experience tailored to adults and young people (aged 14 to 24) living with T1D, as well as to healthcare professionals. This platform, now recognized for its effectiveness in improving self-management among adults living with T1D and building the confidence of healthcare professionals, is a prime resource for education and training on T1D in Canada.

Moreover, the BETTER team has also succeeded in establishing provincial, national and international collaborations, thereby strengthening the project’s impact and scope in the field of T1D research and helping to train the next generation of researchers and healthcare professionals.

New funding for the future 

With this new funding from JDRF, the BETTER project is resolutely looking to the future. Priority objectives include expanding the number of participants and improving representativeness within the registry to better reflect the diversity of people affected by T1D in Canada. Future research will explore a wide range of aspects of living with T1D, and project members are committed to strengthening the promotion and transfer of knowledge to improve T1D care across the country. In addition, they aspire to make the Support e-learning platform a must-have reference for education and training on T1D.

The BETTER team is more than never committed to continuing its efforts to improve life with T1D, and encourages anyone interested in learning more or joining the registry to visit

Recognizing the incredible JDRF Canada volunteers

National Volunteer Week takes place from April 14 – 20, 2024, as organizations across the country celebrate those who generously donate their time and talents to their community. 

The National Volunteer Week theme for 2024 is Every Moment Matters! This theme highlights the importance of every volunteer and each contribution they make at a moment when we need support more than ever.

JDRF is recognizing 50 years in Canada this year, and this theme could not be more appropriate. We were started by a group of devoted parents determined to find a cure for their children living with type 1 diabetes (T1D), and their efforts each and every moment has led to monumental progress in the management of T1D and have brought us closer to cures for this disease.

Our foundations lay in grassroots fundraising, led by our devoted volunteers. For the past two years, we have been so pleased to celebrate this passion for our T1D community through our Annual Volunteer Awards.

In 2023 we were thrilled to recognize individuals, volunteer committees and corporate organizations who have demonstrated incredible commitment, devotion and heart in supporting our collective goal of a world one day free from T1D.

Congratulations to all our Award Winners. To read more about them, please visit:

2023 JDRF Volunteer Awards

Peter Oliver Award for Volunteer Impact

National Volunteer of the Year

National Committee of the Year

National Advocate of the Year

National Fundraising Volunteer of the Year

National Corporate Partner of the Year

National Rookie Volunteer of the Year

National Youth Leader of the Year

Local Impact: Community Volunteers of the Year

Local Impact: Ambassador of the Year

Local Impact:  Business Partner of the Year

Darrin Davis – JDRF Winnipeg founding family member shares what it’s like to live with type 1 diabetes for over 50 years

I was living in Winnipeg; I’ve spent my whole life here. I was diagnosed at the age of 6, spring of 1974, it was the May long weekend. I was not terribly sick but was showing signs: eating a lot, urinating a lot, etc. My mom had a doctor’s appointment and she brought me with her, and the family doctor recognized the symptoms and suggested she take me to the hospital, he met us there and that’s when I received my diagnosis. 

My first thought as a child was regret that I hadn’t eaten the ice cream on the hospital tray, thinking I would never be able to eat it again. 

I also very clearly remember a nurse showing me how to inject a needle into an orange. She also let me inject her!  I learned very early and right away how to administer needles on myself. 

From a child’s perspective, being at school with diabetes was not a challenge because I only took insulin once a day, at breakfast. I went home for lunch. I didn’t do anything that showed I had diabetes. I didn’t have many low blood sugars (hypoglycemia). But each one was a crisis. Every low was an acute low. And it really was “feeling” low – unless you were so low you had physical symptoms. There was no test to identify if I was low, or how low or how long I had been low. I would drink orange juice that we added sugar to, because the risk from a low was so much greater. Now, if I go low, I can eat a few jellybeans or have some sips of juice, because of the information I receive from my CGM (continuous glucose monitor).  

I started blood testing as a teenager in the 1980’s. Before that I tested for sugar in my urine using a test tube and a tablet. Later on, there were test strips. I tested in the morning, evening and before bed. Testing felt like a wasted effort because the results were the same all the time. And there was nothing to do about the results, except record them.     

Now, I wear a sensor that provides information to an insulin pump that adjusts my basal rate based on the results. What incredible progress!   

For the first 10 years after I was diagnosed, I went to the doctor’s office, maybe monthly. He took blood out of my arm and got the same information my sensor provides every five minutes. Except he only had one result a month and would have to determine if my insulin needed to be changed based on that single result. Insulin was also incredibly different. At that time insulin was made from cattle or pig pancreases. There was only short acting, long acting or a mixture of the two (insulins). There was no such thing as a correction dose. You had no way to know if your insulin was right or wrong, all you were really doing was keeping yourself alive with insulin, to prevent wasting (starving).  

Diabetes was managed primarily through strict adherence to a diet. I stopped eating peanut butter as a child because there was sugar added to it. The dietician that my family went to gave us a recommended number of “food exchanges” I should eat. It was all about eating the same number of ‘exchanges’ at breakfast each day. The same applied to lunch, afternoon snacks and dinner. There was no carb counting because there was no variability. There was no glycemic index.  

Another thing I remember from my life as a kid with T1D was ‘cheating’. ‘Cheating’ was eating outside my diet. For example, Halloween candy. This was especially a problem around Halloween or Easter if there was a lot of candy or chocolate around the house. The advice to deal with the impact of having eaten the candy was to go for a walk. We now know that exercise with high blood glucose doesn’t bring it down immediately. You won’t feel the results for a few hours. But that was unknown at the time.     

I went on a pump at 16 because I wasn’t well-managed at the time. My HbA1c was 18. The pump then was the size of an iPhone Max but about three times as thick. There was no way to hide it. Fortunately, I am a gregarious person, and I became comfortable with it. At least to some degree. When I took a break from my pump in my mid-20s and went to multiple daily injections, I would go to the bathroom to take my insulin, if I was in a restaurant. But then I realized (again) I didn’t have to hide it. When I stopped doing that, lo and behold the world didn’t stop moving. It was fine. People weren’t watching me. Mostly they didn’t even notice.  

Now I’m 56. 50 years into this journey with T1D, I don’t seem to have any complications of diabetes.  

I attribute a huge part of my success with diabetes to the fact that when I was diagnosed, my whole family became diabetics. My mother completely changed how she cooked. No sauces, nothing fried. Broiling and baking became the Davis family’s cooking style. I recall we still had cakes for birthday parties, but people would make special desserts for me. If anything, I would have very small pieces, razor blade slices. My parents made it my disease, not theirs. I had to give myself insulin. My dad would just wait with me, even if it took 45 minutes. They would encourage me. But it was always my responsibility. They included it in our lives but did not make life about my diabetes.  My parents’ approach to normalizing life with diabetes quite possibly made the biggest impact on me.  

When I was young. I was hospitalized almost annually, every spring for a few days, because my glucose and insulin were so out of control. I have not been hospitalized since 2000, and before that, it was 1994. In the last 30 years, I have only been hospitalized twice. The power of knowledge, as a person with diabetes, has allowed me to stay out of the hospital. In the past, that knowledge just wasn’t there. And that’s from the progress and the tools. And it’s so empowering. I have confidence that I will be fine, and I can manage it. And I know I can go to the hospital if I need, but I haven’t had to in over 20 years. 

I have been involved in JDRF in many ways – from being on the local board, many galas, Rides, Walks, raffles. I’ve had the opportunity through JDRF to meet people with T1D around the world. I’ve met Senators, PMs, MPs, and met so many families who have been touched with diabetes, from all around the world and all walks of life. All of us brought together by a common cause. And it’s such a powerful community. Truly, my involvement with JDRF is the silver lining of my diagnosis. It’s brought these incredible people into my life. Positive people with a passion for making a difference. Not letting fate happen but trying to change fate. 

The complications of diabetes weren’t risks when I was diagnosed, they were inevitable. That was not good enough for my parents. They didn’t want to let that happen. Which is why my family got together with other families to start the Winnipeg chapter. 

JDRF and the research that it helps to fund, has led to incredible research progress on so many fronts: cures, prevention, and treatment. Insulin analogs, blood testing, glucagon, HBA1c tests were not even thought about when I was first diagnosed. They were theories, ideas.   

Now I wear devices that communicate with each other and decide based on sensor glucose reading how much insulin to deliver to me. And in a full circle moment we are back to no finger pricks. This has allowed us to take advantage of societal changes around labeling and health consciousness which make carb counting and enjoying sweets more manageable.   

Today, we have so much more information. My pump tells me where my sensor glucose is all the time and what percentage of the day, I am in my target range. What my doctor would have given to know that 50 years ago. But there is a downside – more information gives me more to think about. I think I might spend more time thinking about my diabetes today than ever before. And it can be frustrating: seeing my sensor readings going up or down causes me to want to “fix” them.  But I have to wait and see how the insulin on board interacts with the food I ate or wait for the juice I drank to get into my system.   

The worst two hours of my life as a person with T1D was when I thought my daughter might have T1D. She was acting oddly, we were having a bad parenting/kid day, so I tested her blood glucose, and it was high. There is only one reason for a high blood sugar: diabetes. I phoned the DEC (Diabetes Education Centre) who I knew because of JDRF. I phoned the doctor, got her voicemail, and as I waited for her to call me back, my life flashed before me. All the things I had been through. I didn’t want any of that for my child. That was a real moment for me, I had never realized how hard it is to be a parent of a child with diabetes until then. Fortunately for me (and for Sophie) when the doctor called, she told me to wash Sophie’s hands and test her again. We did. Her sugar was normal. It turned out that when I had tested her the first time there was some honey on her finger and that was what caused the high reading.   

The thing I’m most looking forward to from JDRF’s research agenda is prevention because another of my daughters has almost all the antigens for T1D. Fortunately she has not yet been diagnosed with T1D. Also, if we can prevent it, it’s (having type 1 diabetes) done. In the Cure pillar, immune tolerance is the most interesting part for me. Because I am still healthy, a cure would have to be a treatment without immune suppression to be a path I would consider.  

I can’t imagine my life without JDRF. I would miss the community, the enthusiasm of everyone involved and the common purpose. I am immensely thankful for my 50 years with them. Nonetheless, I am looking forward to the challenge of living without the JDRF community because it means we will have found a cure for type 1 diabetes.    

Jo-Anne Robertson shares her story of living with type 1 diabetes for over 50 years 

We lived in the Niagara region. My brother who is one year older than me was diagnosed with type 1 diabetes (T1D) at age 4, and one year later, I turned four and I was also diagnosed. It was devastating for my parents to have both kids with T1D. And it was devastating to me because I knew it meant needles. 

One of my earliest memories was having cereal with brown sugar with my dad every morning. Suddenly, I had to wait for my mom to wake up and give me the needle, and there was no more cereal with brown sugar and that special time with my dad. 

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

We did urine testing back then, and that’s how they discovered that I had diabetes. Because the result was positive when I was tested (a tablet turned different colours depending on how much glucose was in your urine). At first it was fun like a science experiment, but soon it became punitive. I always felt afraid of having tests that were high for any amount of time, because there would be scrutiny. I didn’t have an endocrinologist, I went to a pediatrician, and don’t remember ever having blood taken until I was much older and went to a youth diabetes clinic.  

When you take one injection of long acting and short acting insulin a day, you have to eat for the insulin. So, you had to eat to (match to the amount of) insulin taken, and your diet was about making sure the insulin to food ratio worked and was keeping your blood glucose down. We followed the CDA (Canadian Diabetes Association) exchange system, so we would have ‘two bread exchanges’ for breakfast as an example. And you couldn’t just eat exchanges when you wanted, but you had to eat them at meal and snack time. It was extremely regimented. I couldn’t eat when I was hungry or conversely had to eat even after I was full, and that created a difficult relationship with food that still persists. 

My brother was the [T1D] guinea pig of the family, and a shoutout to my mom who had to figure out how to manage diabetes in a small child. What precautions do you need to take to put him into junior kindergarten, into Cubs, into T-ball? He did a lot of things I either did with him or after him. The path was paved by him and my mom. So, when I came along a year later, in a way, my brother had normalized diabetes in the school, in clubs, on the field and in the neighbourhoood. We did many of the same activities; T1D was just a way of life. We always brought your own snack to activities and decades later, I was flabbergasted when I met someone from that time who remembered that – they had a memory of me eating my own snack! From my perspective, it was just what we did. No big deal. 

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

The biggest change, the gamechanger for me was the CGM (continuous glucose monitor). I’m on a pump, and have been for maybe for 12 years, but I would give that up in a day before giving up my CGM. It’s not only the ability to know where my glucose is now, but to know where it’s going. Having those arrows has made a world of difference.  

What would a cure be for you? 

I would like to get off the diabetes train entirely. I would like to stop having days where no matter what I do, I can’t get my blood glucose down, or up. Food having one impact one day and then it’s different again from one day to another. I don’t want the alarms (CGM alerts about blood glucose being too high or low) repeatedly going off at night.  

I know some people have a hard time with injections, but that doesn’t faze me. I think growing up with needles, when I now get a vaccine and they tell me to take a deep breath, I’m just like ‘are you kidding me’. I could take needles for the rest of my life, and it wouldn’t bother me at all. But I am looking forward to going onto new technology, like a tubeless pump controlled by my smartphone.  

What is your hope for the future? 

I remember as a kid being told a cure was coming, and that it was five years out. And of course, I’ve been living with T1D for over 50 years now. That promised cure never came for me. So, I am pretty resigned to living my life with T1D. I don’t believe that for me personally, that a stem-cell based cure is for me.  

But also – I never knew that a CGM was something I could even dream about. When it came to market it was life-changing. So, it’s hard to envision what other life-changing innovations could come next. Fast acting insulin that worked like the body and you didn’t have to wait for it to work, that would be exciting to me. Ultra-fast insulins. 

Another innovation that would make a huge difference would be finding ways to better preserve insulins, so you could leave your site in for longer, and there would be no need to refrigerate insulins, less potential to develop lipomas, etc. I believe there is research being done in Australia on this, which is exciting. 

What has JDRF meant to you and your family? 

My mom was a president of a branch of JDF (JDRF’s previous name), and we would volunteer at the bingo fundraiser. I started volunteering as soon as I was of age (14), at the bingo halls, and have participated in awareness campaigns. I was interviewed for TV and radio about living with diabetes when I was younger. And it was always impressive how much my mom stepped up. I’ve also volunteered at the JDRF Walk for a Cure, been a Peer Mentor (one on one volunteer program) and I find this really rewarding and satisfying. A two-way connection, having a conversation. That’s really lovely. 

So, it’s good to keep raising awareness of how JDRF is there for those impacted by T1D. I think sharing our 50th anniversary stories in this way could be good for those who don’t understand what living with T1D is all about and inspiring to other people with T1D. 

I’m in relatively good shape for having had T1D for 50 years. As I get older, many of my T1D friends are experiencing a lot of complications, and it’s frightening. And I wouldn’t negate that despite all the progress, this is still a chronic life-threatening disease. It’s so important for research to continue and to make living with this disease easier for the next generation to come, and ideally find a real cure. 

Lorne Shiff, JDRF Board Member and JDRF Canada Founding Family Member

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. 

JDRF Canada speaks with Dr. James Shapiro about his hopes for the future of type 1 diabetes research 

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. 

A mother and daughter share their life of close to 50 years with type 1 diabetes 

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. 

National pharmacare and type 1 diabetes – what you need to know

The last week of February 2024, JDRF Canada staff joined Health Minister Mark Holland in Ottawa as the federal government officially announced the tabling of a framework for a National Pharmacare plan (Bill C-64). This is the first major step towards a national universal pharmacare plan for Canada and a historic milestone for all Canadians living with type 1 diabetes (T1D) as the government announced that one of the first drugs that will be covered is insulin. The announcement also included a specific intention from the government to provide universal, single-payer coverage for diabetes devices.

While this is all good news for Canada’s T1D community, families hoping to take advantage of this coverage will have to wait as several steps must take place before pharmacare gets implemented.

Now that this legislation is tabled, what happens next?

Legislative Process

Bills (like Bill C-64, An Act respecting pharmacare) are proposed laws (not in effect) and must be introduced in either the House of Commons or the Senate. Like all bills under Canadian federal law, Bill C-64 (Pharmacare Act) must follow the legislative process of debate, review, and voting before officially becoming law.

  1. Tabled on February 29, 2024 Bill C-64 entered and completed the first stage of this process on the same day. Known as first reading, the bill was formally tabled in the House of Commons.
  2. A closer examination and debate over the principles of the bill will then take place during second reading, culminating in parliamentarians voting on whether the bill continues the process.
  3. Should that vote succeed, the bill is then sent to the committee stage where a smaller group of parliamentarians will study the bill in detail, section-by-section, and often inviting government officials and/or experts (sometimes even advocates) as witnesses, and vote on amendments before delivering its findings in a report back to the chamber.
  4. At the report stage, parliamentarians can debate on the amendments from committee or suggest new changes to the bill before it becomes finalized in the next stage.
  5. At third reading, parliamentarians debate and vote on the final form of the bill. If the bill fails this vote or if a decision is not made before a session of Parliament ends, the bill stops going through the legislative process and is officially lost. Should the bill pass the vote at third reading, it is then sent to the Senate where it must succeed at every stage of the process again (from first reading to third reading) before receiving Royal Assent.
  6. Once the bill has passed through the House of Commons and the Senate in identical form, the bill is given to the Governor General for Royal Assent and at that point it officially becomes law.

For more information on the legislative process, please visit:

Provinces and Territories

Despite the contents of the bill, provincial and territorial governments are still responsible for the management, organization, and delivery of health care services in Canada. Should Bill C-64 pass the legislative process and receive royal assent, the federal government then has to work with willing provinces and territories (PTs) to implement coverage for specific diabetes medications through bilateral agreements, per the legislation.

Funding will augment, rather than replace, existing PT spending on public drug benefit programs. The governments of each PT must negotiate and enter into an agreement with the federal government before national pharmacare can be expected to roll out.

As the Bill and pharmacare itself are still in early stages, it is yet to be determined what would happen with PTs that elect not to participate in the program. Following the news of a reached agreement between the federal Liberals and NDP on national pharmacare, media has reported that the governments in Alberta and Quebec have announced their intention to opt out of this plan. The Ontario government also has not committed to a national pharmacare plan and has opted to assess the details first. While compensation is on the table, further discussions are expected to take place in the coming weeks now that the Bill has been tabled and its contents made public.

What do we know right now?

If passed, bill C-64 will ensure that following agreement with provinces and territories, people living with T1D in Canada will have access to insulin. Insulin can cost in the range of $900-$1,700 per year per individual, depending on the type and dosage required.

The Government will be launching discussions with PT on providing universal, single-payer coverage based on this list of diabetes drugs and insulins:

Drug ClassBrand NamesGeneric Names
Combination FormulationsSynjardyEmpagliflozin & metformin
JentaduetoLinagliptin & metformin
KomboglyzeSaxagliptin & metformin
InsulinsTrurapi, KirstyAspart biosimilar
AdmelogLispro biosimilar
Humulin R, Novolin ge TorontoRegular, Human
EntuzityConcentrated Regular, Human
Hypurin Regular Insulin PurePork regular insulin
Hypurin Nph Insulin Isophane PorkInsulin Isophane, Pork Pure
Humulin-N, Novolin GE NPHIsophane Human, NPH
BasaglarGlargine biosimilar
SemgleeGlargine biosimilar
Humulin 30/70, Novolin 30/70 Reg-Isophane, NPH Human
Insulin SecretagoguesDiamicron MRGliclazide
SGLT2 InhibitorsForxigaDapagliflozin

Separate from Bill C-64, the federal government is announcing its intention to establish a fund to support access to diabetes devices and supplies (such as continuous glucose monitors). Further details regarding this fund will be provided following discussions with PT partners, who will be essential partners to the roll out.

Next Steps

Bill C-64 is still in its early stages, and we expect it to continue to evolve and develop as the government consults with provinces, territories, Indigenous peoples, and other partners and stakeholders. As it makes its way through the House of Commons and then the Senate, you can read the debates and follow its legislative process on the federal government’s website here.

In its current state of the bill at first reading, should the bill receive Royal Assent:

  • The Health Minister will establish a committee of experts within thirty days that will make recommendations concerning the options for operating and financing a national, universal, single-payer prescription drug insurance plan.
  • Ministerial outreach will commence on next steps, including discussions with provinces and territories regarding bilateral agreements.-
  • The Health Minister will request that within one year on which this Act receives royal assent, the Canadian Drug Agency:
    • Prepare a list of essential prescription drugs and related products to inform the development of a national formulary
    • Develop a national bulk purchasing strategy

What is JDRF Canada’s role?

Our work is not done. We will still have a role to play in advocating to ensure that the right list of essential type 1 diabetes devices and treatments are part of the national formulary, as well as ensuring the special fund for provinces on devices does provide equitable and affordable access. Patient choice will be paramount in our advocacy strategy around pharmacare.

For more information:
• Government Backgrounder:
• JDRF News Release:

Celebrating the women accelerating research progress in T1D this International Women’s Day

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:

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.

How to self-advocate with your healthcare providers

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.

Founding family member Jimmy Garfinkle shares his 50-year legacy with JDRF Canada

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.


Stigma and type 1 diabetes

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: