Every year, Bell runs its #BellLetsTalk campaign, in an effort to raise awareness and combat stigma surrounding mental illness in Canada.
Living with T1D, whether it’s you, your child, or another family member, both at the time of diagnosis and throughout managing this chronic condition —affects more than just physical health. T1D can also impact social, behavioral and emotional well-being, known as psychosocial health. Mental health issues are common for people with T1D, at any age.
January 28, 2021 marks this year’s #BellLetsTalk day. This provides us the opportunity to talk freely and safely about mental health issues, and to raise awareness of the challenges faced by people living with T1D daily – and how JDRF Canada is looking to do more to address mental health in this community.
Life with T1D
T1D is an all-consuming chronic condition that currently has no cure. Once someone is diagnosed, disease management becomes a 24/7 task that lasts throughout a lifetime.
This means frequently checking blood sugar (at least 5-6 times daily), insulin doses that must be administered many times per day and calculated carefully based on food intake, exercise, stress, illness and other frequently unpredictable factors.
No matter how strict and careful someone is with their diabetes management, they likely will still experience frequent blood sugar highs and low – sometimes to dangerous levels.
T1D never gives you a day off. It can be exhausting. And it takes a toll on mental health.
How living with T1D can impact mental and psychosocial health
Throughout their lifetime, people with T1D often experience mental health issues that can include mild depression, major depressive disorder, anxiety, and “diabetes distress” – a term describing the powerlessness, stress, guilt, relentless worry and denial that comes with living with diabetes and the burden of self-management.
Compared to those without the condition, kids, adolescents and adults with diabetes are at greater risk of developing these mental health issues.
Yet despite this, and our growing understanding that unaddressed mental health issues correlate with higher HbA1c and higher risk of complications in people with T1D, management of T1D most often focuses on glucose control, without sufficient attention given to psychosocial health needs.
It can become a continuous cycle, so T1D management should include a holistic approach that ideally includes psychosocial health needs as well. However, psychosocial issues in T1D are under-researched and underappreciated, and our healthcare system does not currently have the capacity to fully address them.
What is JDRF Canada doing to help?
In January, 2021, JDRF Canada launched its $100 Million Campaign to Accelerate, which includes a six-pillar approach to funding research and other programs that accelerate towards cures and improving lives for people living with T1D today. One pillar of the campaign is dedicated to addressing mental health issues and expanding support to the T1D community.
As we work towards developing a more fulsome approach to mental health support within the T1D community and healthcare system, we are actively engaged in offering programs that help foster connection and support for people with T1D today.
From the day of diagnosis to daily life decades later, we know that connecting with others who have been impacted by T1D can be an important source of support.
Our Let’s Talk T1D series, which moved virtual during the COVID-19 pandemic, helps to make these connections. In this series, we bring experts from across the country to you for virtual educational events and community hang outs to help you and your loved ones live well with T1D. Participants can hear from new speakers, engage with other families and individuals with T1D and expand their knowledge on important topics – all from the comfort of home.
Our Connection Seriesis a national conversation held virtually for adults and parents in the T1D community to form new connections and engage in conversations across province lines. These series aim to help parents develop relationships with their peers who may share similar experiences, and understand the ever-changing demands of living with T1D.
Talk T1D is a mentorship program that provides one-on-one support to families who are impacted by T1D from trained volunteers who have been there. Our volunteers understand the daily challenges of living with T1D and are there to provide emotional support and connect you with resources across Canada.
On #BellLetsTalk day, and every day, we recognize the need to reduce the stigma around mental health issues. When we reduce the psychosocial challenges of T1D, the result is better overall health outcomes for the T1D community.
For those of you who live with type 1 diabetes (T1D) or have a loved one who does, you know that T1D can feel like a monster that impacts every aspect of your life.
The discovery of the insulin hormone 100 years ago helped to tame the monster, but it’s always there; spoiling even the simplest moments in life. To mark insulin’s centenary, JDRF has been working tirelessly on a bold and innovative plan to defeat the T1D monster, once and for all.
T1D affects every aspect of life. It comes with health implications, an economic burden to families and governments with expensive treatment costs and the psychosocial effects of living with a chronic illness that impacts every decision a person makes throughout their day.
2021 marks the 100th anniversary of the discovery of insulin and to mark this important milestone, JDRF Canada, the largest charitable funder of T1D research in Canada, is pleased to announce the launch of our $100M Campaign to Accelerate. This bold and innovative fundraising initiative aims to accelerate T1D research to move beyond insulin, build upon a long legacy of outstanding Canadian diabetes research, and accelerate towards cures while also improving the lives of those living with T1D.
“Lots of children are afraid of monsters, but only some have actually experienced one – like my son. He lives with type 1 diabetes, a relentless monster that is always there, ready to pounce – whether he is enjoying a snack or playing with friends. We must constantly be on high alert. The Campaign to Accelerate is putting a multi-faceted plan in place that can attack this monster from every angle, and we are inviting all Canadians to help us in accelerating the pace of type 1 diabetes research.”
– Ryan MacDonald, Campaign to Accelerate, Campaign Co-Chair.
The Campaign to Accelerate will focus on six key pillars that aim to help improve the quality of life for people living with T1D today and create a future without type 1 diabetes.
The JDRF-CIHR Partnership to Defeat Diabetes – by accelerating the pace of Canadian T1D research breakthroughs
High-Impact Global Research – collaborating with researchers across the globe on research trials and projects
JDRF Centre of Excellence at the University of British Columbia – launching the first JDRF Centre of Excellence in Canada, focused on cure research
The T1D Fund – promoting investment in commercial development of new T1D drugs and devices through venture philanthropy
#AccessForAll – advocating with Canadians living with T1D to ensure more access to affordable and lifesaving technology
Mental Health – expanding mental health supports for those living with T1D
“The launch of our $100M Campaign to Accelerate is monumental in the lives of Canadians living with type 1 diabetes. While the discovery of insulin in Canada 100 years ago saved millions of lives, it is still not a cure. It is fitting that now is the time to map out the next era of discovery in type 1 diabetes research. Through our Campaign to Accelerate, we will transform our approach to research, redesigning it for speed to give Canadians hope for freedom from type 1 diabetes.”
– Dave Prowten, President and CEO, JDRF Canada.
The Campaign to Accelerate will rally volunteers from coast to coast to invest $100 million over the next five years to bring life-changing therapies to patients and families faster and ensure that Canadians living with T1D have better access to lifesaving technology and mental health support.
“As a parent of a 40-year-old daughter living with type 1 diabetes, there is nothing harder than watching your child struggle with this relentless monster that requires multiple, daily injections just to temporarily fend it off. One hundred years ago, we found a way to tame this monster with the discovery of insulin. Now it is time for us to defeat it for good and the Campaign to Accelerate, coupled with philanthropic support from Canadians, will get us there quicker.”
– Peter Oliver, Campaign to Accelerate, Campaign Co-Chair
To learn more about the $100M Campaign to Accelerate, visit jdrf.ca/accelerate.
For years, Rebecca Redmond’s mantra was to “stick to the devil you know” when managing her type 1 diabetes (T1D). That meant injecting herself with insulin numerous times a day, even after developing a phobia of needles, resulting in debilitating anxiety attacks and sometimes even forgoing meals.
“It wasn’t until my son said, ‘If there’s a simpler way to do this or a way that wouldn’t be so hard on you, shouldn’t you do it?’ Kids have a funny way of motivating,” Redmond says of her decision to switch to Insulet Canada’s Omnipod® Insulin Management System two years ago.
The wearable, waterproof* pump – called a Pod – freed her from the injections she had been giving herself since being diagnosed with T1D in 1989 at the age of 17. “It totally changed my life,” the London, Ont. artist and blogger says. “I can switch my insulin pump out faster than I could ever give myself an injection, so it has given me the gift of time. It has also given me mental freedom because I’m not giving in to those fears of doing my needles.”
The innovative technology has special meaning to Redmond, whose grandmother’s cousin, Sir Frederick Banting, co-discovered insulin and was the first to use it on people to treat diabetes.
As this year marks the centenary of the discovery of insulin, she celebrates the advancements in life-saving technology for insulin delivery making it available for people like her who need it to survive. “Without my cousin’s discovery, I wouldn’t be alive today,” she says.
The Pod has had such a positive impact on her life, Redmond is excited to be among the first in Canada to adopt the new Omnipod DASH® Insulin Management System, which recently earned Health Canada’s approval. It provides up to three days of non-stop insulin** delivery and combines the Pod with a Personal Diabetes Manager (PDM).
“This means users can tailor their insulin needs much more precisely now,” Hulton says. The Pod can be worn almost anywhere you’d give yourself an injection and the Pod site tracker helps you rotate your pod sites to make insulin absorption more effective.
“The DASH System is the next step in our mission to make diabetes a smaller part of your life by simplifying insulin management,” says Hulton.
Insulet Canada is launching the Omnipod DASH System on a province-by-province basis throughout 2021 to coincide with reimbursement by provincial health programs. Visit www.omnipod.com for more information.
Legal:
*The Pod has an IP28 waterproof rating for up to 7.6 meters for 60 minutes. The Personal Diabetes Manager (PDM) is not waterproof.
2020 was a year of challenges brought on by the COVID-19 pandemic. Despite the disruption to our normal way of doing things, thanks to your support, our JDRF-funded research was able to progress and produce some exciting new developments.
As 2021 marks the 100th anniversary of the discovery of insulin, at JDRF we are moving into the next phase of our research strategy,transforming our approach and redesigning it for speed to give Canadians hope for freedom from type 1 diabetes (T1D).. With your help, we are building upon the Canadian legacy of Banting and Best to push aggressively towards cures; while supporting the vital research and programs that improve the lives of those living with T1D. To learn more about our bold and innovative$100M Campaign to Acceleratethat aims to defeat the T1D monster that burdens 300,000 Canadians, go to Jdrf.ca/accelerate
Some highlights of the new initiatives we’ve been able to support over 2020:
Dr. Ahmad Haidar, Assistant Professor at McGill University in Montreal, QC
Dr. Haidar is testing whether adding a hormone called pramlintide to insulin therapy can eliminate the need for carb counting in teenagers and adults with type 1 diabetes (T1D) using a closed-loop system.
Dr. Megan Levings, Professor, Department of Surgery, Faculty of Medicine, University of British Columbia and an Investigator at BC Children’s Hospital in Vancouver, BC
Dr. Levings is studying how the autoimmune response is curtailed by T1D therapies in clinical testing, and exploring new approaches to cure T1D by targeting the immune system.
Dr. Andrew Pepper, Assistant Professor, Faculty of Medicine & Dentistry at the University of Alberta in Edmonton, AB
Dr. Pepper’s work aims to advance an approach for long-lasting islet replacement therapy that will not require immunosuppression. Right now, islet replacement therapy is limited in scope to those who have very difficult-to-control T1D, who still stand to benefitfrom an islet trasnplant despite the risks of long-term immunosupression.
Watch a video about the 2020 research highlights:
For more information on our research strategy, please click here.
We will be providing research and other education updates in each issue of our bi-monthly T1D Insider Newsletterin 2021 as we mark this very important milestone of 100 years of insulin. Don’t forget to sign up to stay updated!
On behalf of the 300,000 Canadians living with T1D, thank you for supporting research that is bringing us closer to turning type one into type none.
With the holiday season quickly approaching, it’s time to start thinking about shopping lists, holiday plans with friends and family members, and how to keep our children active during their time off from school, while adhering to the safety measures influenced by the global pandemic.
What should not be missed is being mindful that the virtual manner in which we communicate, combined with the colder weather brought on by the coming of winter can make isolation and inactivity a reality for many families during the 2020 holidays. It’s also a time that can be challenging for people with type 1 diabetes (T1D). During this time of year, it’s important to remember that having T1D doesn’t mean missing out on the celebrations.
On Tuesday, December 8th we held our final Let’s Talk T1D of 2020 with special guest Michael Watts, who led a discussion on Staying Connected during the Holidays.
Michael is a medical social worker, and a university sessional instructor. He is trained as a therapist and counsels on and psychosocial issues related to adolescents and families impacted by T1D, chronic respiratory challenges and weight and health issues.
Michael’s presentation explored diverse ways in which to protect against isolation while enhancing activity levels during the holiday season. References to the mind, body, spirit and emotional quadrants were explored, as well as practical strategies which aim to create appropriate levels of structure and routine during the holiday season.
This year, as gatherings should be kept small and limited to your household due to COVID-19 – there is more time for idleness and snacking. Pre-planning to try and keep your blood glucose as steady as possible can be very helpful. Work together with your family to plan exercise activities that you can do together; bake or prepare healthier snacks and make sure to carb count.
Navigating holiday time while living with T1D using these tips may help to decrease your stress, relax and recharge:
This year more than ever, the holiday season is about more than cookies and gifts. However you can reach out and connect to your loved ones and friends, whether it be over video chat, text or phone call – stay safe, stay well and look forward to a better year ahead.
Stay active. You’ll feel better and have more energy, it will help you regulate your blood sugar and it’s something you can do as a family.
Don’t skip meals in preparation for a larger one. Make sure to eat regular and balanced meals that include carbohydrates, protein and some fat. Not only will this help control your blood glucose, but it will make it easier not to overeat at a single meal.
Plan ahead. Learn the carb counts of holiday treats that you might love, like Christmas cookies or a glass of eggnog. Plan to accommodate them, so you don’t end up feeling deprived or resentful.
Be considerate of what you eat. Do you really want something placed in front of you, or are you just considering eating it because it is there? Eating mindfully can help keep your glucose levels steady and help you better enjoy the food you really want.
Test your blood sugar levels frequently so you can stay on top of it and hopefully avoid any crashes or spikes.
Be kind to yourself. This will be a different kind of holiday season. Everyone will be feeling the strain, give yourself time and space. If you find that your blood sugar levels drop or spike, correct, move on and don’t beat yourself up over it.
This year more than ever, the holiday season is about more than cookies and gifts. However you can reach out and connect to your loved ones and friends, whether it be over video chat, text or phone call – stay safe, stay well and look forward to a better year ahead
UPDATE: On December 23rd Health Canada authorized the use of the Moderna vaccine in the fight against COVID-19 for individuals of 18 years of age and older.
JDRF welcomes the authorization of the first COVID-19 vaccine by Health Canada, which we hope will be one of many to be approved in the coming months to address the pandemic. We are grateful for the unprecedented effort by the many research scientists, clinical trial participants, industry partners and government officials who contributed to global efforts to rapidly bring COVID-19 vaccines through the pipeline and to our communities.
The one vaccine approved thus far in Canada is the Pfizer-BioNTech vaccine, which has been approved for use in people aged 16 and over. The vaccine will be given in two doses, at least three weeks apart. Vaccinations have now begun in Canada, with vaccine roll-out plans still evolving. It is currently unclear whether and when people with diabetes may be prioritized for receiving the vaccine. However, JDRF will be advocating on behalf of the T1D community, making it clear to decision-makers that those living with diabetes must be included as a priority group to receive early COVID-19 vaccinations. Evidence does suggest that those living with diabetes, T1D or T2D, could face more severe disease and an increased risk of COVID-19 complications if they develop the disease. As such, JDRF strongly believes this group should be considered a high-risk population and have earlier and easier access to the vaccine. We will keep our T1D community up-to-date as further decisions are made around vaccine roll-out and administration.
Should I get the COVID-19 vaccine if I live with T1D?
Vaccination will not be mandatory in Canada. However, for people living with diabetes, we encourage you to receive the vaccine when you are offered one, pending consultation with your doctor about your individual circumstances. This is because adults, especially older adults, with diabetes (type 1 or type 2) are at risk of developing severe illness if they do get COVID-19, and vaccines are the most effective way to prevent that from happening.
Is the vaccine safe for people with T1D?
Thus far, the Pfizer-BioNTech vaccine is the only COVID-19 vaccine approved in Canada. Trials of this vaccine included people with diabetes, and the data to date show the vaccine is safe and effective for people with T1D.
Health Canada has issued specific guidance on the Pfizer-BioNTech vaccine for people with serious allergies.
Will the vaccine work just as well in people with diabetes?
People with T1D are not immunocompromised, and previous research indicates that the immune response to fighting coronavirus in people with diabetes is no different to people without the condition. In addition, data on the Pfizer-BioNTech vaccine made available by the US FDA indicate that the vaccine is just as effective in people with diabetes as without. However, there is still uncertainty about the length of protection any of the vaccines will provide.
For further information about the availability of COVID-19 vaccination in your community, refer to your Provincial or Territorial Health Authority. As well, please be sure to speak with your healthcare provider with any further questions you may have and to help you make the most informed decision around vaccination.
It’s been just over a year since the virus SARS-CoV-2, which causes the disease COVID-19, was identified.
The COVID-19 pandemic was declared in March 2020. As knowledge about the effects on people with type 1 diabetes (T1D) grew, we updated our information on a dedicated page and in numerous blogs. Unfortunately, most areas of Canada (with the exception of the Atlantic provinces) are deep into the second wave, and many communities are back in some form of modified lockdown.
However, there has recently been reason to have optimism as a number of COVID-19 vaccine candidates have been identified. The UK has already begun its vaccination program.
As of December 2020, Canada had sources more potential vaccine doses per capita than any other country in the world, and as of December 14, 2020, a selected few began to receive their inoculations, although most will be vaccinated in 2021.
As we head into the winter and the cold settles upon us, social opportunities that could take place outside will be limited – and many of us will again begin to feel the strain of isolation. Combine this with living with T1D and the everyday burden of maintaining healthy blood glucose levels, hydration and nutrition throughout the holiday season, when outdoor activities aren’t as accessible.
It’s a lot – and it’s understandable if COVID fatigue is starting to set in. Protecting yourself from the virus on top of everyday diabetes management is a lot to deal with.
Fortunately, we are now better equipped with knowledge of how the virus works and how to best protext ourselves from contracting it. And there is hope on the horizon.
What we know now
How it’s most likely transmitted
At the beginning of the pandemic, it wasn’t immediately clear how COVID-19 was spread, or how contagious the virus was. We didn’t know if was spread by ‘fomites’ (virus particles that remain on surfaces), droplets (from sneezing and coughing) or aerosols (meaning it spreads through the air and can be passed on by an infected person through talking or breathing).
We now know that fomites are not a likely source of virus spread – but that the virus itself is highly contagious and infectious. And that it can be spread via both droplets and aerosols.
Initial advice about protecting yourself and others still stands. Being diligent about frequent handwashing and trying not to touch your face remains true today. The best measures people can take are practicing hand and respiratory hygiene, physical distancing, wearing a face covering, sanitizing high touch surfaces and keeping social contacts limited.
Are people with T1D at greater risk of contracting the virus that causes COVID-19?
There is still no evidence that people with T1D are at any increased risk of being infected by SARS-CoV-2 than anyone else in the community. At the beginning of the pandemic, there may have been higher infection rates among the diabetes community as they had more healthcare contacts.
Are people with T1D at a greater risk if they do develop COVID-19?
People with T1D do not generally have a compromised immune system. However, they may be at higher risk of complications if they do become infected, especially if they are older or have other risk factors, such as kidney disease.
There is no new evidence to indicate that children or young adults with T1D are, on average, at increased risk of complications of COVID-19 if they develop the disease. However, as with any viral infection, blood glucose can be much more difficult to manage, meaning that extra glucose and ketone monitoring is advised for anyone with T1D who develops COVID-19.
Can COVID-19 cause T1D?
A small number of case reports have proposed that COVID-19 can cause diabetes in selected individuals. However, most larger studies do not support this finding. Thus, to date, there is no compelling evidence that COVID-19 can cause T1D. Some effects of the pandemic – such as changes in exposure to the usual, seasonal viruses due to public health restrictions and wearing masks – could potentially affect incidence rates of T1D in the future.
Are COVID-19 vaccines safe for people living with T1D?
The Pfizer and Moderna COVID-19 vaccines use new and cutting-edge technology – known as mRNA vaccines. This is different from other vaccines you get from your doctor, like the MMR or flu inoculation, most of which use an attenuated (or ‘weakened’) form of the virus to trigger an immune response in the body.
These new vaccines work by injecting genetic material called mRNA (messenger RNA) into the body. The mRNA carries instructions that direct the body make the “spike” protein found on the outer surface of the coronavirus (the red edges poking out the ball), and in turn generates a protective response against it – or to the coronavirus, if you should later be exposed to it.
There is no information to date to suggest that the COVID-19 vaccine would not be safe for people with T1D, should they choose to receive it. Generally, people with diabetes have been prioritized for vaccines for infectious diseases, such as the flu.
This information should not be taken as medical advice. Every individual is different and will have unique healthcare needs. Speak to your primary care physician and endocrinologist to come up with the treatment plan that works best for you or your child with T1D.
What you can do now
Stick to the basics
The basics are still the best way to keep yourself and your family safe.
Try to find time for hobbies, books, movies and games that bring you joy and relaxation. Turning off devices and taking a break from news can also help. Filling your time with activities that bring you satisfaction and fulfillment can help ease some of boredom and isolation that may occur over the winter months.
How to get support
JDRF offers a series of virtual events and seminars to help foster connection to other members of the T1D community. Our Let’s Talk T1D Education and Connection series are held monthly to bring people together to discuss issues important to families living with T1D and provide the opportunity for social engagement. These series are meant to both educate and help ease potential loneliness and isolation. Both are offered in both English and French.
The COVID-19 pandemic has been a time of incredible emotional and physical strain. The burden has been even greater for those with T1D. But there is light at the end of the tunnel. With each day that passes, we get one day closer to our new normal.
If you don’t already, please follow us on our social media platforms, where we post tips and articles of interest and encourage you to engage and provide feedback.
To mark November’s National Diabetes Awareness Month, JDRF is excited to announce a new investment of $6 million to support two Canadian research teams as part of the JDRF-CIHR Partnership to Defeat Diabetes to help accelerate development of stem cell-based therapies for type 1 diabetes (T1D).
These new studies make possible the reality of eliminating the need for insulin injections for those living with T1D. There are more than 300,000 Canadians living with T1D, an autoimmune disease with no known cause or cure, resulting in the dysfunction, damage or loss of pancreatic beta cells that produce insulin in our bodies. People with T1D must treat themselves with insulin several times per day to keep their blood glucose levels normal and despite their best efforts; they often experience serious and even life-threatening complications.
Stem cells show great promise as a source of insulin-producing cells that could be transplanted to provide a new source of insulin that replaces dysfunctional, damaged or lost pancreatic beta cells. Canada has a remarkable legacy leading discoveries in this area. Stem cells were discovered in Toronto in 1961; and in 2000 a team in Edmonton pioneered a protocol for transplantation of pancreatic islets (the part of the pancreas that contains insulin-producing cells) that produces insulin independently in many patients who undergo the procedure. These achievements represent important steps toward a treatment that will allow people with T1D to live healthy lives without daily insulin injections.
The two research teams are being led by Dr. Maria Cristina Nostro, Senior Scientist at the McEwen Stem Cell Institute at University Health Network and Associate Professor at the University of Toronto, and Dr. Francis Lynn, Associate Professor with the Faculty of Medicine at the University of British Columbia and an Investigator at BC Children’s Hospital. These teams will build on Canada’s demonstrated research excellence and leadership in clinical islet transplantation, stem cell biology, diabetes, immunology and genetic engineering to accelerate stem cell-based therapies for T1D. Teams will work in collaboration with other Canadian researchers to tackle some of the biggest scientific challenges that impede our progress in this area and move us closer to a future where people with T1D no longer rely on insulin therapy.
Dr. Maria Cristina Nostro’s Research Team
Islet transplantation could help T1D patients regain control of blood sugar levels, making this an alternative to insulin injections as the only existing treatment. However – donor scarcity, poor islet survival after transplant, the need to optimize the transplant site and the need for life-long immunosuppressive treatment in order to prevent transplant rejection mean this treatment is only accessible to a handful of people with T1D.
Dr. Nostro’s team will leverage their expertise in stem cell biology, vascular biology, islet transplantation and beta cell biology to address these challenges and work to develop a safe and effective clinical-grade product for therapy.
The outcome from these studies will accelerate universal donor stem cell-based T1D therapies.
Dr. Francis Lynn’s Research Team
Dr. Francis Lynn and his team will also be working towards developing a cure for T1D by replacing insulin-producing cells via transplantation.
Advances made by these research teams could not only transform the lives of thousands of Canadians living with diabetes, but also greatly reduce the tremendous economic and health burden that diabetes places on Canada today. This research may also ultimately benefit people with insulin-requiring type 2 diabetes (~30% of cases), further broadening the potential impact.
JDRF Canada is proud to support these two teams, who will carry out exciting and ambitious cell replacement research. As we approach the centenary of the discovery of insulin, we remain committed to funding research that moves beyond insulin therapy, eventually providing people with T1D freedom from their disease. This announcement is an important step in that direction.
We invited people affected by type 1 diabetes (T1D) – children, parents and researchers – to share what they wish people knew about what it means to live with this disease. Read on to learn varying perspectives of how T1D affects members of the community every single day, and what they would say to T1D with these Dear Type 1™ letters.
Myrzah, mother of Caleah
T1D has significantly changed my life as a parent. I constantly worry about the health of my daughter far more than before the diagnosis. I have more knowledge about the human body and nutrition values of food.
I feel I had to become T1D nurse overnight and become part of her support system. It is very important to have a good support system of family and friends.
People have the perception that after the diagnosis and consulting the medical team, T1D is under control. They don’t understand that it’s a daily task to maintain control. We need to accelerate the pace of T1D to give a better life quality to the people living with T1D and potentially avoid future diagnoses.
For me, a cure would mean that my daughter wouldn’t have to worry about her blood sugar levels 24h/7. She could be out with her friends without having to think about her level of activity and what she is eating etc. And of course, I would worry much less when she goes out with her friends.
My message to other parents of newly diagnosed T1D children is after the shock of the diagnosis and the overwhelming time of learning everything, it is important to accept that this condition is now part of your child’s life and family. Acceptance is key to keep going, especially on the days where we are completely discouraged.
Caleah, Diagnosed at age 8
Since my diagnosis, I have to constantly check my blood sugar levels, take note of what I eat and count carbs. I have to take care that I am not too high or too low. It is something I constantly have to take care of.
I want people to know that it’s not because I eat too much sugar or have poor health habits that I have T1D. On the contrary, we can’t prevent getting a T1D diagnosis. Our pancreas ceases to produce insulin.
Having better research and progress into T1D would facilitate our lives. And a cure would mean freedom and peace of mind. No more checking blood sugars, carb counting or worrying about my blood levels.
Having T1D does not prevent you from following your dreams. You can do whatever you want as long as you manage your T1D properly.
Fanny Guimont-Desrochers, PhD, SCYM, Immunology Research Scientist
Diagnosed at age 5
I was diagnosed with T1D when I was 5 years old. It immediately turned my life upside down. I had to prick my fingers and inject insulin multiple times a day. One could think that the injections were the worst part, but the management of the disease was way harder.
Living with T1D is like wondering at every moment of your life if your body will fail you, either because of low blood glucose level (which can cause coma if not treated), high blood glucose level or long term T1D-related complications (such as blindness, heart attack, kidney damage). This is also why I became a research scientist to help advance the cause of a T1D cure.
We need to accelerate the pace of T1D research because we are standing at a crossroads. Many promising innovations are close to becoming reality, and we need to make them available to all those who need it.
New fields of research are opening and hinting at promising potential therapies or cures that we never thought possible. Better treatments and even a cure for T1D have never been at a closer reach than they are today.
Recently, I had two safe pregnancies (without dangerous hypoglycemia) and perfectly healthy babies. Living with T1D is still a challenge I have had to live with every moment of every day for the past 30 years. That is why I am so committed to work with JDRF to cure diabetes
Helping JDRF find a cure for T1D will prevent kids other from losing their childhood. A 5-year-old kid should think about playing with his friends, not his next insulin injection. We have extremely talented scientists working on better treatments and cures. They need our help.
This exclusive group, created to provide stable funding to researchers, offers a first-time opportunity for donors to fund the research they believe in most.
Beyond Insulin™ members who make a minimum 2-year pledged commitment of $500 or more, per year, will be the first to hear about new research and treatment trials and take part in a JDRF first: the opportunity to choose, as a group, which research to accelerate.
Research is what will change lives for those living with T1D, like David. At 33-years-old, David was diagnosed with T1D. Thanks to JDRF, he had the opportunity to immediately enrol in a JDRF-funded research trial: Dr. Jan Dutz was conducting a study to see if ustekinumab, a drug that is already approved to treat other chronic diseases including Crohn’s disease, might slow the progression of T1D in people with a new diagnosis. To David’s excitement and relief, the treatment worked.
For the first two years after his diagnosis, David didn’t use insulin. This was monumental, because it slowed the pace of his diabetes and gave him valuable time to adjust to living with T1D. But the drug didn’t cure David’s T1D. After two years, he required insulin and continues to use it to manage his condition.
In 2019, JDRF invested $8.1 million into T1D research in Canada, a 5% increase over 2018. Thirty seven cutting edge projects and clinical trials were supported in Canada. Globally, 180+ new research grants were awarded for the world’s most promising studies.
Research towards a cure is accelerating at incredible speed. While a lifesaving and lifechanging treatment, we recognize that there is a need to move beyond insulin. JDRF is proud to be at the forefront of this movement.
Please consider becoming a member of Beyond Insulin. Membership will allow us to push T1D research forward faster and help to change the lives of thousands affected by T1D.
This year hasn’t been easy. As we adapt to a new way of living and shift our means of interaction virtually, we wanted to make sure we were still able to provide you with the best updates in research, education and all-things type 1 diabetes (T1D). So we launched Let’s Talk T1D!
We’re bringing experts from across the country to you with a series of virtual educational events, and community hang outs in order to help you and your loved ones live well with T1D. We want to thank everyone who has attended our events these last few months, and let you know about some more we have in the coming weeks!
Connect with your community
On the fourth Wednesday of each month, please join us in a virtual conversation for Adults and Parents in the T1D community. Here, you’ll have the ability to interact with people who have similar, lived experiences with T1D, Grow relationships with your peers and understand the ever-changing demands of living with or being affected by T1D. Click here to join one of our upcoming events!
Do you have questions about the disability tax credit (DTC) and its impact on your finances? Did you know that you can get a grant of up to 300% with a Registered Disability Savings Plan (RDSP) and you can save money for your children? Attend our Talk T1D: Education Series: T1D and Crunching the Numbers to know more about the different plans and get answers to your financial questions. Link coming soon!
We understand how important it is to have the ability to engage with those who have similar lived experiences with T1D, while educating yourselves on the latest T1D updates – and now you can do all of that from the comfort of your own home! We can’t wait to see you at our next session.
During the week of November 2nd, delegates joined JDRF for its annual Kids for a Cure Program. This year, due to COVID the event was held virtually.
Hear from some of this year’s participants:
Senator Nancy Hartling, Moncton, New Brunswick:
“Kids for a Cure was the highlight of my week. Talking to the kids and their parents and hearing their positivity gave me hope for the future and stirs me forward to keep the momentum going.
I have a personal connection to type 1 diabetes, my 8-year-old grandson who lives in BC has T1D. When I hear from the kids – I use the conversation in my speeches – it’s their voice that I want to bring forward to the government because hearing it in their words is so important.
JDRF has my commitment to write a letter to the government to supportCIHR funding – our office will be doing that, and I intend to continue speaking about it.
Across the country, access to the devices that help people manage T1D is not equal and consistent. And when all families can’t access it equally – it can be a challenge to get what they need to manage their illness. It’s even more important during COVID, as this equipment can help to keep people out of the hospital.
I want to tell all the kids and JDRF to please keep up the good work. Thank you for connecting me, I have great respect for JDRF.
I’m a very strong-minded, take-action kind of person, and I’m used to working towards solutions to my problems in my everyday life and being able to handle most things independently. But I can’t solve the problem of having diabetes by myself. No amount of hard work or dreaming big will make that happen if it’s just me. I can’t cure type one diabetes myself, as much as I want to. But Kids for a Cure is my chance to work towards a cure with dozens of other advocates living with type one diabetes who want to get rid of type one just as much as I do. And in addition to working with the other delegates, we’re also all supported and propelled forward by JDRF. JDRF gives us the platform we need in order to have our voices heard by the right people – the people who control how much funding goes into type one diabetes research. Working with JDRF and the other delegates through Kids for a Cure gives me a chance to fight for a solution to one of the biggest, most dangerous, and most heartbreaking problems in my life. Kids for a Cure to me means a fighting chance at a better future, in a way that can actually yield results.
Doing Kids for a Cure virtually had pros and cons. It was organized flawlessly and gave us (the delegates and our families) many chances to connect and plan and prepare for our MP and Senator meetings. Additionally, doing it online meant we didn’t have to go all the way to Ottawa, so it kept our schedules freer and allowed each team of delegates to have more opportunities to meet with government officials. The only con for me was that I didn’t get to meet any of the other delegates in person.
During Kids for a Cure 2018, when we all stayed in the same hotel in Ottawa, we had an incredible opportunity to be surrounded by other type one diabetics – people who understand everything it takes to manage type one diabetes in a way that only other type one diabetes can really understand. It was very special and meaningful for me, especially because I don’t have any type one diabetics in my family or my immediate circle of friends. I don’t often get the opportunity to talk to other type ones, which is isolating for me. Doing Kids for a Cure virtually still gave delegates opportunities to connect, but there was something special about all of us being in the same room, talking and laughing and being physically all together, united by our experiences and our fight for a cure.
I hope that the JDRF-CIHR Partnership to Defeat Diabetes is renewed so that we can continue to have the funding that we so desperately need if we want to move closer to a cure to type one. I also hope that the government officials with whom we met will remember us, remember our stories, and remember type one diabetes. I hope they remember our dedication, our passion, and our drive, and how hard we’ve worked to get to where we are today. Type one diabetes takes so much – mentally, physically, and emotionally – to manage and live with. We work so hard every day just to keep ourselves going, at this point without even an end to look forward to. I hope they remember us. However, they decide to show their support for us, I want us to be remembered.”
“I would like to congratulate the JDRF and its delegates for their awareness campaign, Kids for a Cure, on juvenile diabetes. Not only was this campaign a great success with participants, it was also an opportunity for the JDRF to share its hard work in research to improve the quality of life for those living with juvenile diabetes.
The two main events of this campaign, November 2nd and 3rd, also provided an opportunity for youth delegates to engage us in meaningful interactive activities to share the reality of their condition.
This reminded me and my elected colleagues of the importance of the partnership between the government and JDRF in the fight to eradicate type 1 diabetes. I applaud the impact of such awareness campaigns. As Co-Chair of the All-Party Caucus on Juvenile Diabetes, it was a great pleasure and honor for me to participate and deliver a speech. JDRF and Canadians with juvenile diabetes can always count me to be an ally.”
Terri: “This being my third time doing Kids for a Cure, it was sure different than the past.
I feel the whole atmosphere doing this in Ottawa was always amazing, and the interactions between the candidates were the best part, they got to be with so many others from all across Canada, this is where Colby and I both made amazing friends.
As for this years’ virtual Kids for a Cure, it was amazing in different ways, I believe that we had way more meetings than if we were in Ottawa, and we had great success with all our attendees making it to the meetings and I feel that we had their undivided attention. I love them interacting with the kids and asking them questions. It was a little tougher as for the internet and technology aspect but it always worked out.
While I loved all experiences we have had, I feel the better experience was the personal one in Ottawa, but as for the aspect of the MP and Senators I think they took more away from the meetings this year.
I would love to be able to do this again, it is both Colby and I passion to raise awareness.”
Colby: “First off, I have to thank everyone at JDRF for all the hard work that they do, especially to make things like kids for a cure possible. This is my third year and my favourite of all the JDRF events because we get to share our story with the people who can make a huge impact on Type1 and help us we hope find a cure.
I love chatting with the Members and I love how every time we meet with them they are always so amazed and they always seem to realize that this is a disease that affects all ages and that it is something they can get behind to make a real difference.
This year was a little different while I did seem to have a lot more meetings than before, it was kind of sad that it wasn’t that personal one on one meeting, face to face that I feel was a better impact and as well to be in the room with so many others and to meet all the delegates from across Canada is way better, sadly these times and the new way of life didn’t allow this. In the meetings virtually I do believe that there may have been more attention to the important topics and less off topic subjects, to have the scrapbooks online for them to follow as well was a huge help.
I am happy to have gotten the chance to speak to so many members and to hear them all say they will support us and they believe that it is something they will move forward with was good, and to know that by us doing this can make a lot of needed changes is also the part I like. I hope that I will get to do more things for JDRF and I want to be able to say I was a part of finding the cure.
I have been a Type1 for 7 years and from my first JDRF event I knew it was where I wanted to put my support, to know that there is a organization determined to help me and so many others living with Type1 and giving me so much hope for a cure, it was where I belonged.
It is fun to meet so many others through JDRF that live with Type1 and to know that all across Canada and the world there is so many like me struggling everyday with the same issues is a comfort.
I will always support JDRF in any capacity that will allow, and I will always encourage others to do the same. I believe that with all of us fighting the fight and JDRF on our side we will find a cure.”
Tilly would like to say: “I LOVE ‘Kids for a Cure’. It’s such an amazing experience to be part of. Meeting and connecting with other kids with Type 1 who also want to make a difference is my highlight. Advocating is a passion of mine and being able to be in front of MPs, Senators and other key decision makers is a privileged situation to be in. I’m thankful to JDRF for giving me this opportunity and for their ongoing support to the Type 1 community.”
I really felt that it was so important for each MP to hear the stories of these amazing T1D’s warriors but also the stories of the parents who care for them. The MPs that we spoke with were all very much in support of what we were asking and again it gave us hope that soon there will be a cure for this disease, hopefully in Hartley’s lifetime.
The virtual event was a huge success in my opinion. There was very little technical issues and everything was laid out on how we wanted each meeting to unfold. The only change I would have made is to be with all of the wonderful delegates in Ottawa. Fingers crossed it will happen next year.
Thank you again for all you do and if there’s anything else you need we are an open door for you.”
