Category: Uncategorized

The American Diabetes Association’s 84^th Scientific Sessions were held from June 21- 24^th 2024. This annual conference brings together researchers and scientists to both present and learn about the latest in type 1 diabetes research and technological advancements. Many of the presentations features study results from researchers funded by Breakthrough T1D (formerly JDRF International) and JDRF Canada. The work presented at ADA will advance research and ultimately improve outcomes for people with diabetes (T1D).

Updates in Cell Therapy Research:

Cell therapy aims to replace the insulin-producing beta cells that are destroyed in people with type 1 diabetes so that they can produce their own insulin again.

Vertex Pharmaceuticals presented an update on their VX-880 product, a stem cell-derived replacement therapy with immunosuppression. Of the 12 patients who have been dosed, nearly all (11 of 12) have has a reduction or elimination of exogenous insulin use (via pump or injection). All patients have achieved an HbA1C below 7.0% and time-in-range above 70% on continuous glucose monitoring with the reduced or eliminated insulin administration. There have been no serious adverse events reported.  The trial is expanding recruitment for 37 participants to progress towards pivotal development.

Vertex is also now recruiting patients for their VX-264 therapy. This treatment will use the same cell therapy as VX-880 but encapsulate the cells within a device designed to shield the cells from the body’s immune system, meaning immunosuppression should not be required.

This research was made possible by years of funding by JDRF and the T1D Fund to Doug Melton, Ph.D., and Semma Therapeutics—a biotech company founded by Melton to develop a stem cell-derived islet therapy for T1D—which was acquired by Vertex Pharmaceuticals in 2019.

Cristina Nostro, University Health Network, presented an overview on her JDRF-funded work designing an optimal beta cell surrogate. Her work ranges from establishing optimized stem cell products to the use of microvessels for the purpose of increasing cell engraftment after transplantation.

Alice Tomei, University of Miami and Diabetes Research Institute is funded by Breakthrough T1D (formerly JDRF International) to examine immune protection strategies for immune protection of transplanted beta cells. She presented an update on research that looks to co-deliver immunomodulators via biomaterials along with transplanted beta cells to provide local, specific immune protection.

Jeffrey Millman, Washington University, presented work on his research looking into making stem cell-derived beta cells more functional so that they produce insulin levels similar to healthy human beta cells. To date, stem cell-derived beta cells have underperformed compared to healthy human beta cells.

Katy Digovich from Minutia presented ongoing research funded by an Industry Discovery & Development Partnership grant from Breakthrough T1D. They are developing nanoparticle trackers that provide real-time monitoring to assess and modify beta cell transplant health post-engraftment in patients with T1D.

Harald Stover from Allarta Life Science (Hamilton, ON) presented ongoing research funded by an Industry Discovery & Development Partnership grant from Breakthrough T1D. Their work focuses on synthetic gel coatings that are designed to both support (with nutrients and oxygen transfer) and protect (with immune evasion) beta cells during transplantation.

Updates in Disease Modifying Therapy Research

Kevan Herold, M.D., presented a secondary analysis of the phase III PROTECT clinical trial. In October 2023, Tzield™ (teplizumab-mzwv) showed that it can slow the loss of beta cells and preserve beta cell function in newly diagnosed (stage 3 T1D) children and adolescents ages 8-17. This analysis demonstrated that, in addition to slowing down the loss of beta cells in new-onset T1D, Tzield can decrease insulin dose and improve time-in-range. This reinforces our commitment to supporting therapies that preserve beta cells at onset, which is important for the prevention of complications and improvement in new-onset clinical factors.

Learn more: https://www.breakthrought1d.org/news-and-updates/ada-takeaways-day-1/

Updates in Screening and Monitoring of Early Stage T1D:

Breakthrough T1D spearheaded an effort to develop the first internationally agreed-upon guidance for anyone who tests positive for T1D autoantibodies, co-published in the journals Diabetes Care and Diabetologia.  

These provide guidelines for monitoring children, adolescents, and adults who test positive for T1D autoantibodies, along with recommended monitoring frequencies and actions for healthcare professionals when the risk of progression toward symptomatic T1D is high.  

The guidance also includes recommendations for educational and psychosocial support for positive T1D antibody individuals, including their families and caregivers, and may also lead to primary care doctors screening more frequently since there is actionable monitoring guidance available to them.   

For the first time, individuals, families, and healthcare professionals have concrete next steps to monitor early stage T1D progression and catch symptoms early to prevent DKA.   

This guidance was developed with over 60 international experts, representing 10 countries and endorsed by 11 national and international societies. 

The author list includes Dr. Diane Wherrett of SickKids Hospital, lead of the JDRF-CIHR funded CanScreenT1D Canadian Screening Research Consortium https://jdrf.ca/canscreent1d-screening-research-consortium-in-canada-announced/

Learn more: https://www.breakthrought1d.org/news-and-updates/breakthrough-t1d-spearheads-formation-of-monitoring-guidelines/

Updates in T1D Devices:

• Medtronic MiniMed 780G, especially the importance of initiating it as soon as possible following diagnosis (which is now recommended in the ADA Standards of Care for both children and adults), citing the CLVer trial, which found clinically meaningful and sustained improvements in blood sugar management following early AID initiation.
  
• Medtronic MiniMed 780G in high-risk youth with T1D, with 80 participants aged 7-25 years, who demonstrated an average HbA1c reduction of 2.5% (from an average baseline HbA1c of 10.5% to 8%), improvement in time-in-range, and a reduction in low blood sugar events.

Learn more: https://www.breakthrought1d.org/news-and-updates/ada-takeaways-day-2/

Updates in T1D Complications

SGLT2i Shown as Potential Solution to Help Manage Renal Complications and Improve Glycemic Control for Young Individuals Living with Type 1 Diabetes

Findings from Dr. Farid Mahmud’s JDRF funded ATTEMPT study, showed that a low-dose of SGLT2 inhibitor could safely be given to youth and adolescents with type 1 diabetes (T1D) to improve kidney function and glycemic management. ATTEMPT is the first of its kind, landmark trial designed to evaluate the effectiveness of SGLT2 inhibitors to optimize diabetes control and prevent early subclinical kidney complications in an at-risk pediatric population with T1D.

This medication was evaluated alongside safety protocols to mitigate the risk for diabetes ketoacidosis. It is not approved for T1D by Health Canada.

To learn more: https://ow.ly/FYuL50SoFxT

Updates in Psychosocial Aspects of Living with T1D

BETTER presentation

Maya Nehme, RD/Dt.P, Research Center CHUM presented results from a cross-sectional study that explored Diabetes Distress among Persons Living with Latent Autoimmune Diabetes of Adults in the Canadian Cohort BETTER. Initially funded through the JDRF-CIHR Partnership to End Diabetes, JDRF Canada has extended funding for the BETTER project for an additional 3 years.

The BETTER project includes 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.

The study found that emotional burden is significantly greater in persons with LADA than in persons with type 1 diabetes. JDRF Canada is pleased to continue to support the BETTER project and enable such studies to shed light on the daily challenges of those living with T1D.

Throughout June nearly 50 communities gathered across Canada to raise funds for type 1 diabetes research.

The JDRF Walk to Cure Diabetes is the largest fundraising event in Canada that brings together the type 1 diabetes (T1D) community to raise funds for T1D research. A fun-filled family and community celebration, the Walk has raised more than $140 million to date in its more than 30-year history – making it one of the longest running and most successful fundraising events in Canada.

Funds raised will go towards research into curing T1D, while improving the lives of people living with it today.  This year is the 50th year of JDRF in Canada, and we celebrated the decades of progress, momentum and breakthroughs that have taken place since then, while recognizing the time is now to push forward towards screening, prevention and cures for this disease.

June was once again designated as Walk Month and to date more than $2.6M has already been raised in support of the most promising diabetes research. Additional Walks took place in May with a number of communities still planning Walks in September.

The Walk is so much more than just a fundraiser. It’s a chance for families living with T1D to meet, share their stories and gain support from each other. Many Walks had a tent and activities designated specifically for new families, supported by JDRF Volunteers to provide the most up to date information and resources on navigating life with T1D. As well, trained Research volunteers were on-hand at several sites to provide participants with information on the latest updates in T1D research, and at the Toronto Walk how to access JDRF’s Clinical Trial Finder tool, and several Walk sites had information on the stages of T1D as part of our Awareness Corner activities.

Games were set up for the kids and emcees helped keep the energy fun and exciting with music. Each Walk location had their own unique spin to make the day one to remember for the T1D community.

At the Toronto Walk, we were once again joined by JDRF ambassadors Max Domi and Kaleb Dahlgren, who met with families, took photos and helped to lead the warm-up. Max took time with every child who wanted to meet with him, signed autographs, spoke from the stage and brought hope and inspiration to everyone in attendance.

We would like to express our sincere gratitude to all our sponsors. With their support, we were able to offer an incredible day of community spirit with valuable resources for T1D families while innumerable connections were made. Across Canada, the Walk was an acknowledgment of 50 years of progress in T1D research, with the recognition that there is much work to be done.

Thank you so much to our Walkers, volunteers, donors, vendors, and our local, regional, national partners. We could not have done it without you. Together we walked, and with each step we took, we got one step closer to a world free from T1D.

Our Partners

National Partners

Content warning: This story is about a young man who tragically died from diabetes complications and experienced mental illnesses

In May 2024, Evan Hunt laced up his running shoes and took the first of approximately 50,000 steps in the BMO Vancouver Marathon. He thought of his brother Brendan, who had undergone the pre-run ritual countless times. For Evan, the marathon was a labour of love for Brendan, who tragically passed away from type 1 diabetes (T1D) complications in 2022 at age 28.  

In 2023, Brendan’s parents, Steve and Trish Hunt, contacted JDRF on a mission to turn their unfathomable loss into a means of helping others. They learned about JDRF’s Mental Health Strategy for T1D and wanted to support it however possible. They made a gift – the first from many donors across Canada – to help establish the Brendan Hunt Diabetes and Mental Health Fund at JDRF, which will launch once $1M is raised. The Fund will support JDRF’s Mental Health Strategy for T1D and other mental health research, such as four interventional research studies matched by the Canadian Institutes of Health Research (CIHR).  

Trish Hunt explains why JDRF’s Mental Health Strategy for T1D is so important:  

“As was our experience with our son Brendan, we know that T1D can be the root cause of subsequent serious mental health challenges and the evolving diabetes distress that can have a profound impact on quality of life and longevity. Having spent an entire career in health care, we need to empower existing systems of care, providers, and teams to increase understanding of the mental health impacts of diabetes and provide evidence-based tools and support for individuals with T1D and their loved ones. This must become a holistic approach, as once youth age out of pediatric care, they still need consistency, coordination, and support in their care. JDRF supports major advancements in this crucial area.”  

Trish and Steve believe Brendan could have benefited from mental health support that better understood what it means to live with a chronic disease like T1D. 

Brendan voluntarily committed more than three years of his young adult life living in residential treatment centres to improve his mental health. Though they were some of the most difficult years of his life, Brendan became a leader in the Vancouver facilities he resided in. He started running clubs and made many friends, showing great kindness and compassion to his fellow residents. He worked hard and ultimately overcame his addictions in treatment centres and demonstrated tremendous resiliency.  

Over the next several years, he worked different jobs, was always quick to fix a computer or car, and was equally passionate both out on a 10km run or inside playing a video game. He was upgrading his math courses and working towards an IT diploma when he tragically passed away from T1D complications early in 2022.  

“The combination of challenges Brendan dealt with, physical and mental, robbed him of the stability one needs to thrive in our conventional society,” shared Steve Hunt during Brendan’s celebration of life. “With courage, he worked around those challenges and had great success as a runner, a cyberspace warrior and community member, a friend, brother, and son. Brendan did a lot in his 28 years. It went too fast, but we are forever grateful for having him in our lives.” 

The Hunts and JDRF are rallying support from individuals, corporations, and foundations across Canada to help establish the Fund, which has reached over $650,000 towards its $1M goal. Once established, the Fund will remain a mechanism for funding any of JDRF’s mental health strategy initiatives as they arise.  

Since 2021, the Mental Health Strategy has been training mental health providers and other caregivers about diabetes (over 1,000 registered to date), is funding community initiatives across Canada that address the psychosocial aspects of the disease and supports scalable research interventions.  

JDRF looks forward to celebrating the fund’s donors once $1M is raised to launch the Brendan Hunt Diabetes and Mental Health Fund at JDRF.  

Most recently, Evan Hunt raised nearly $16,000 from various donors for the Fund through his marathon run in Brendan’s honour.  

“JDRF is deeply committed to creating mental health resources for the millions of Canadians impacted by diabetes,” Evan shared on his crowdfunding page. “Running for 3 hours and 53 minutes around Vancouver and getting to the finish line was truly a highlight of my life. Despite the pain in the final stretch, it was so rewarding and only increased my drive to keep running and honouring Brendan’s legacy.” 

To support the Brendan Hunt Diabetes and Mental Health Fund at JDRF through a leadership gift, contact Jen Bavli, Director of Leadership Giving, at jbavli@jdrf.ca or 604-292-2777.  
 
If you or a loved one are experiencing diabetes distress or other mental health challenges, you may find a mental health provider near you at https://directory.jdrf.ca/   

Guest post from Devin Myers, RN

Devin Myers is a health writer as well as a registered nurse. She has experience in various areas of nursing including critical care and hemodialysis. She has worked with many people with type 1 diabetes (T1D) throughout her career and has relatives with T1D.   

Her passion is sharing health information on a large scale to help people live healthier lives.   

When not writing or working as a nurse, you can find her spending time with her husband and son, hiking, boating, and spending time at the family cottage.   

Visit her website to learn more: myershealthwriter.com   

What I, a nurse, want patients with type 1 diabetes to know before their next healthcare appointment. 

The three things I want you to know are:  

1. I am listening. 

2. I care. 

3. I want to work WITH you to find solutions. 

I know many people with type 1 diabetes (T1D).  My sister was diagnosed at the age of 5, my brother was diagnosed at the age of 16, and I have other close relatives who have been diagnosed. I am also a registered nurse with eight years of experience and have cared for many people with T1D over the course of my career. I see the daily challenges and how every aspect of life can be impacted. So many people with T1D often feel misunderstood and judged by healthcare providers.  

I spoke with my sister, Jane, who has had T1D for 32 years. When I asked about her experiences with healthcare providers, she said that when she was first diagnosed at 5 years old, she remembers that all the healthcare providers were very nice. When she got older, she remembers feeling ashamed when going to appointments.  

Some of the more unpleasant interactions stick out in her mind. She said, “A doctor once told me I was her worst diabetic”. She also stated that a healthcare provider asked her when she ate her last chocolate bar. During another visit a healthcare provider said, “I am a diabetic too, so I know how this works” and proceeded to tell her a list of things she had to do. Because these specific things were working for him, he said they “should” work for her too. Jane states, “It’s hard because you’re the one living with it and you try your best”, but often she feels unheard during these appointments. 

I have heard similar stories from other people with T1D that I have met with in my practice, as well as my other family members. I think it is safe to assume that you may have had at least one encounter with a healthcare provider that made you feel shame, guilt, or unheard. 

So, imagine you are due to have your next appointment with your doctor. You are worried your A1C, the measurement of your blood sugar average over 3 months, will be high. The last few weeks have been stressful. You know you didn’t eat as well as you “could” have, and you have been exercising but “not enough”. You are ashamed that your blood sugar level isn’t where you need it to be, and you don’t want to feel even worse about it when you speak with your healthcare provider.  

You arrive for your appointment. You walk into the building, and you see me, your nurse. I greet you, get you situated, and then we begin. Remember the three things I want you to know: 

1. I am listening.  

I genuinely want you to tell me what you are thinking and feeling. I want to know how your life has been since your last visit. What have you been struggling with? What has been going well? What do you need help changing, or maintaining, with your blood sugars, schedule, insulin, and diet? Share as much as you feel comfortable sharing. The more information I have about how things are truly going, the better care I can provide.  

Also, remember that we are all human. Healthcare providers can say the wrong thing. It is unfortunate but it is the reality. We all have our biases that we may not even notice. If something I say upsets or offends you, tell me. I want to know so that I don’t do it again. If you have had a negative experience in the past with another healthcare provider, tell me. I don’t need to know the specific details, but knowing your general experiences will help me support you in ways that another healthcare provider was not able to.  

2. I care. 

I want to help people be healthy. I don’t want to speak for all healthcare providers, but it is a safe bet that most healthcare providers want that too. I care about your health, and I genuinely want to spend my time helping you be the healthiest version of you. 

3. I want to work WITH you. 

It is your life. Your daily routines, diet, hobbies, interests, joys, challenges, and supports are all different from mine, and everyone else. What works for my sister, my brother, and my other patients in terms of insulin, exercise, and diet might not work for you. Everyone is so different and so many things affect your blood sugar and how your body uses insulin; diabetes management is not a one size fits all. 

My goal is to find solutions that are going to work for you. It is a collaborative effort when coming up with a plan that will help you be as healthy as you can be. If your conversation doesn’t feel collaborative, speak up. 

I, unfortunately, will not be with you during your next appointment. You may not get to speak with a nurse before you see your family doctor, an endocrinologist, a dietician, a lab tech, or anyone else on the healthcare team. But please remember that I am listening, and I care. I want to work with you and all other individuals with diabetes, and other healthcare providers do too. Go into your next appointment with this mindset. See if it helps you share a little bit more, or address something that was said that made you feel shame. Collaborate with your healthcare provider to set a realistic goal for your next appointment that you feel might fit with your life. Open communication is the key to good care. You can do it. We are listening.  
 
If you need some more resources, a peer support group, or other educational material, the JDRF has supports in place.  

Source: 

https://www.cdc.gov/diabetes/managing/managing-blood-sugar/a1c.html#:~:text=The%20A1C%20test%E2%80%94also%20known,care%20team%20manage%20your%20diabetes.

Suzanne Reisler Litwin has been fundraising for JDRF, quite close to the organization’s founding and has a goal of raising $50,000 for this year’s Montreal JDRF Walk to Cure Diabetes to support type 1 diabetes research.

Suzanne Reisler Litwin, born and raised in Montreal, is a mom and an educator at Concordia University in the Continuing Education department.  She also teaches creative writing courses at the Cumming Centre. She holds creative writing workshops depending on where the need is and writes a bi-monthly column in The Suburban newspaper.

JDRF recently had the chance to talk with Suzanne about her more than 40 years of fundraising for the organization and her hopes for the future.

JDRF: Tell us about your time with JDRF and why you’ve been so committed to the cause for so many years.

Suzanne: It started 43 years ago, when I was 18 years old, in 1981. I think I was 17 and I had a little crush on Jimmy Garfinkle’s brother David (brothers who live with type 1 diabetes and are members of JDRF’s Montreal-based founding families).  So when he asked me to do the Bike-a-Thon (one of the first JDRF fundraising events), I obliged. I took a few girlfriends with me, and we were all eager to help and support the type 1 diabetes (T1D) community.  It was very grassroots, the way in which we got donors, you had to go door-to-door and ask for support. It was a 50km bike ride, and people would donate 10 cents or 25 cents a kilometer.  We had sponsor sheets, and once the event was completed, we went back to the donors to collect the proposed funds.  Everything was in coins and dollars. I had to go to the bank, roll the coins, and make a cheque for the foundation.

As for me and David? David and I were not to be.   But I ended up marrying Jimmy’s best friend, so we stayed very close, raising our families together and being forever friends.

For me, raising donations for the Bike-a-Thon was fun.  A sponsor would offer a dollar a kilometer, and it was amazing. In the first year, I raised about $100, then a bit more, and then a few years later I raised $1000 and became an Executive Rider. That provided us with an executive rider tent.  At that point, the event had moved from Hampstead to a larger location because it was getting too big for the original location.  We would ride a 5km route, and do it 10 times, riding through the city of Montreal.  

At this point as well, I was given more tools to reach out to more people who had already sponsored me. In 1987, I started sending letters to my sponsors. The organization was called JDF (Juvenile Diabetes Foundation) at the time.  They gave me the JDF letterhead, and I used it to type out my personalized text, and we ran it through the printers. Everything was done by hand; nothing was digital yet. I didn’t realize it then, but these 20-25 letters would become the cornerstone of my fundraising efforts.

Those JDF sponsor letters produced $2, 3, 4K – and then I got creative. I decided the best way to get funds was to give a ‘gift’ or a ‘gift with purchase’.  In 1997, I wrote a rap, in 1998 I wrote a ‘cheer; in 1999 I ‘sent a penny’ as our team’s lucky charm.  I gave everyone a penny hoping to raise more money, the next year I increased it to a nickel.  Then I started to give items from the dollar store, like a mirror, for our theme “mirror mirror on the wall’, asking our sponsors to look into the mirror and see an amazing fundraiser.

For my 20^th year JDRF fundraising anniversary, I sent a wedding anniversary invitation.  The following years, I would send Blackjack playing cards, lottery tickets, post-its, anything that was flat, light and inexpensive, went into the letters. People started anticipating a theme. I’d get stopped in the grocery store and people would ask me, what’s this year’s theme?

In 2004, we switched from the Bike-a-Thon to the Walk (JDRF Walk to Cure Diabetes). During the ride, four years in a row, we had terrible weather. Rain, snow, people were freezing, the Bike-a-Thon, now called the Cyclothon was in May, which can still be dicey weatherwise in Montreal. We looked at each other and said there had to be a better way. So, we switched to doing the Walk (which takes place in June).

It was around this time, I started focusing on annual fundraising themes, and then in 2013, I made the switch to digital media. I was able to work with super talented graphic designers. When I turned 50, the theme was, “50 Shades of Suzie”. The gift with the letter was a 50 cent coin!  At this point, all my sponsor letters and fundraising went digital and the campaigns were raising $15K to $20K, went to $25K, The campaigns were really consistent with these big numbers and everybody was still receiving gifts. The campaign themes were becoming entertaining, which caused some curiosity.

Today, I cap the sponsor letters at 250. It’s just enough so I can keep costs down, and still raise a significant amount of funds.  (JDRF note: Suzanne doesn’t charge anything back to JDRF and everything is done out of pocket).

After the pandemic, I realized the strength of social media and how powerful it can be. With social media, I was able to create ‘interactions’ with my sponsors and media followers.  I think it was in 2022, I’m just learning how to do these things, as I’m no spring chicken, ya know.  I had my face photo shopped into Rosie the Riveter.  Instead of the statement ‘We Can Do It!’ we wrote, ‘We Can Cure It’.  We sent our sponsors a red bandana and asked them to take a photo wearing it and making the hallmark fist pump. The photos got posted to social media everywhere.  That’s when the campaign got traction. People would ask me for a bandana.  We had so many photos of people, babies, children, dogs doing Rosie the Riveter. We raised a lot of funds for this campaign and I realized the power of social media and interaction.  People wanted to be part of this “Fun-raising”.  Anyone who asked me for a bandana, I would say sure, but I would also ask for a donation to JDRF.

Last year (2023), we sent our sponsors round colourful glasses, based on the 1960’s and a groovy theme. The campaign created wonderful interest, curiosity and amazing participation. We raised over $44,000 trucking down the JDRF highway!

This year (2024), we sent big $ dollar sign rhinestone gold necklaces and feathers. Our theme and slogan is ‘Viva Las Curas’ (Live the Cure), which is based on the glamour and high rollers of Las Vegas. I really had to think hard this year – How was I going to spin Vegas into a diabetes cure?  The idea took months, what were we going to send, how can we mail it?  We landed on FEATHER$$ and Viva Las Curas.

Today, we are so far so good. I am receiving Viva Las Curas pictures, and we are on track. Every month, I need to raise about a third of my goal leading up to the Walk. I believe there is a good chance I might get close to $50K.  We hope everyone participates. It’s all about the T1D community, having fun; I call it ‘FUN-raising’. It’s also about awareness, and helping more people learn about T1D and its impact on people who live with it.

But… I must emphasize – I don’t do this on my own. I have a team of people who work with me every year. Excellent printers, graphic designers, artists, friends and family and we regroup every year, and think about how we can do it again, even better, next year.  The JDRF Staff/friends (Staffriends) are the most amazing people to work with.  JDRF and its staff are simply the most BEAUTIFUL and THE BEST!  We couldn’t do what we do without this amazing organization and peeps.

Even my Mom, who will be 90 years old, is a huge participant in the complete process.  It’s a family thing, and it ends up being a very big part of my life, our lives.

It’s not just a fundraising campaign, it’s part of the landscape of who I am.  And I have two personal feelings about it – I like to finish everything I start in my life.  I feel I started this, and it’s not finished, so I continue.  My other personal quest is, if it should happen, if there is a cure for T1D realized in my lifetime, we, our team, would be a part of that success.  That my time here on earth was useful, not just for my family and my career, but for mankind. I don’t ever want to give up that opportunity of a T1D ground breaking success.  Even if it doesn’t happen in my lifetime, I can still rest knowing that we have tried, in my life, to change the trajectory of mankind, and that we never gave up.

Even when I see people using their CGMs (continuous glucose monitors that measure blood glucose levels in people with diabetes), I feel we helped contribute to that. Non nobis solum, Latin for ‘not for ourselves alone’.  Not just for us, but for everyone.  We go through life as yourselves, and those closest to us.  I ask, what is your footprint in this world?  This is our opportunity to maybe create a life changing footprint. For this, we are not willing to give up. I believe something will be realized soon (when it comes to cures for T1D).  If not in my lifetime, perhaps in my children’s lifetime.  This is the wonderful opportunity that we work with and love.

JDRF gives me almost carte blanche to do what I want. Other organizations don’t provide that type of freedom, I share the campaign theme with my JDRF co-workers, I get the OK and I can exercise my creativity.  Then we run with it.  We trust each other.

It’s a gift for me, that I can continue to do this year over year. I love it. It’s a tremendous, creative space for me.  The Walk brings people together in an enthusiastic way.  This year I have so many more requests from people who want to join our team, Suzie’s Sweethearts, who will embrace our Vegas showgirls and showguys theme. We will all be wearing special T-shirts and FEATHER$$ at the Walk this June.

This year, while walking, we will give away our feathers and necklaces to children walking near us.  By the time we finish, we don’t usually have what we started with as we share the joy while Walking to Cure T1D.

After the Walk, team Suzie’s Sweethearts goes back to my home, to relax and enjoy the accomplishment. Then I get into bed around 3pm, and I sleep for hours in the most content sleep.  When I wake up I usually say, ‘OK, what’s next’?

Other organizations have tried to poach saying, ‘you’ve done so much for JDRF, maybe come to us for one year’.

But I always go back to my original promise I told Jimmy and David, as long as you have diabetes, we will do this. I committed to them, and they committed to me.  Sadly, there is growth in the T1D community, so we can’t stop now, we mustn’t stop!

Our fundraising takes up to 10 months of the year, it’s constant work. I take the month of July off after the Walk. In August, we send out really amazing thank you letters to our sponsors. Then, the process starts again in September, October to come up with the next theme, the slogans, gifts, and the graphics, to keep the momentum going. (We have a thought for 2025 😉)

We will keep going until the day we have cures for T1D, and I have kept my promise to Jimmy and David.

If you would like to support Viva Las Curas please follow this link: https://jdrf.akaraisin.com/ui/jdrfwalk2024/p/Suzanne

To participate in or volunteer for the “JDRF Walk to Cure Diabetes”: https://jdrfwalk.ca/

To receive our “Viva Las Curas” sponsor letter package, please email: Suzanne@suzannereislerlitwin.com

Update – May 9, 2024

JDRF Canada has been clarifying elements of Bill C-64 – National Pharmacare Act with the government and we wanted to share what we’ve learned. We will continue to update as we learn more and share with our T1D community and stakeholders:

Frequently Asked Questions

Q: If I currently have private health insurance that covers insulins NOT on the national pharmacare list, will I still be covered for those?
A: Yes, the national pharmacare plan will NOT replace existing private or public insurance coverage. It is meant to be additive.

Q: If I currently have private health insurance that covers insulins on the national pharmacare list, do I need to switch to the government-funded plan?
A: No, you can choose to remain on your existing private health insurance for this coverage.

Q: If I am currently on a public provincial plan that covers insulins NOT on the national pharmacare list, will I still be covered for those?
A: Yes, the national pharmacare plan will NOT replace existing public or private insurance coverage. It is meant to be additive.

Q: If private and public insurance will NOT be replaced by national pharmacare, what is the benefit of a new pharmacare program?
A: The national pharmacare plan will potentially augment existing provincial plans. It can also benefit those who are uninsured, underinsured or those who have a co-pay with private insurance and national pharmacare makes access more affordable.

Q: If I have private or public insurance and I am using an insulin on the national pharmacare list, who will pay for it?
A: If you are using an insulin on the national pharmacare list, you will have the choice of remaining on a publicly-funded plan or your private insurance plan.

Q: Is the backgrounder list of insulins a final list of what pharmacare will cover?
A: The backgrounder is meant to be a minimum starting point. The goal is to expand this list through negotiations with provinces and territories.

Q: Will the national pharmacare insulin list be the same across all provinces and territories?
A: The list provided is for discussion with Provinces and Territories for specific coverage within that Province and Territory. There may be some differences across provinces, depending on what is negotiated in agreements between provinces and territories and the federal government.

Q: Will my device be covered under the diabetes devices and supplies fund?
A: The federal government is consulting with provinces, territories, and stakeholders to identify gaps in coverage to focus on related to the special devices fund. More information will be provided following those discussions.

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March 8, 2024

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: https://learn.parl.ca/understanding-comprendre/en/how-parliament-works/how-a-bill-becomes-a-law/

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 Class	Brand Names	Generic Names
Combination Formulations	Synjardy	Empagliflozin & metformin
	Jentadueto	Linagliptin & metformin
	Komboglyze	Saxagliptin & metformin
Insulins	Trurapi, Kirsty	Aspart biosimilar
	Apidra	Glulisine
	Admelog	Lispro biosimilar
	Humulin R, Novolin ge Toronto	Regular, Human
	Entuzity	Concentrated Regular, Human
	Hypurin Regular Insulin Pure	Pork regular insulin
	Hypurin Nph Insulin Isophane Pork	Insulin Isophane, Pork Pure
	Humulin-N, Novolin GE NPH	Isophane Human, NPH
	Levemir	Detemir
	Basaglar	Glargine biosimilar
	Semglee	Glargine biosimilar
	Humulin 30/70, Novolin 30/70	Reg-Isophane, NPH Human
Insulin Secretagogues	Diamicron MR	Gliclazide
		Glyburide
Biguanides	Glucophage	Metformin
SGLT2 Inhibitors	Forxiga	Dapagliflozin

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: https://www.canada.ca/en/health-canada/news/2024/02/universal-access-to-diabetes-medications-and-diabetes-device-fund-for-devices-and-supplies.html
• JDRF News Release: https://jdrf.ca/news/canadians-living-with-type-1-diabetes-will-have-improved-access-to-the-treatments-and-devices-they-need-through-a-new-national-pharmacare-program/

Alison Hunt is celebrating her 28^th DiaVersary by walking 28km to raise funds for JDRF and T1D research

I was born and raised in Sudbury, Ontario and moved to Ottawa, Ontario in 2010 to start my undergraduate degree. I graduated with an Honours Bachelor of Social Sciences in International Development and Globalization from the University of Ottawa in 2014, and stayed in Ottawa where I currently reside with my husband J-F and our one-year-old Doberman, Rogue. In my spare time I enjoy travelling, going to sporting events and concerts, baking, playing board games with friends, and walking and snuggling with my dog!

A DiaVersary is the day that you were first diagnosed with type 1 diabetes (T1D). Can you tell us a little more about what you remember from that day and why you have chosen to make it a positive with this fundraiser?

I was diagnosed with T1D in August 1996, a couple of weeks before starting my first year of school. Having just turned four years old, I don’t remember much about my hospital stay when I was initially diagnosed. I do remember my older brother coming to visit me in the hospital and playing a Space Jam arcade game in the hospital’s playroom, and going for walks along Ramsey Lake where I painted rocks.

I also remember that by the time I left the hospital, I had quite the collection of finger puppets knit by hospital volunteers, which served as a welcome distraction from the many finger pricks (blood tests to test blood glucose levels)!

My mom learned to administer needles on an orange and counting carbohydrates was more challenging back then as not all food items had nutrition labels like most do now. Being an avid dog lover for as long as I can remember, one of my fondest post-diagnosis memories was receiving an enormous stuffed animal dog from the owner of my dad’s place of work, which I at first thought was real, and later named Mutsy.

Growing up with T1D I played numerous sports including soccer, tennis, rowing, dance, horseback riding, swimming, and badminton, enjoyed sleepovers and birthday parties with friends, and went on many school field trips and family trips. My family never let my T1D get in the way of enjoying all the things that a child without T1D would enjoy – it just became our new life routine, and I owe the positive attitude I have around T1D today to them. While it took a lot more planning, particularly around insulin dosing and carbohydrate counting, they never let that stop me from trying new things or making new memories.

What changes have you seen in T1D management since your first ‘DiaVersary’?

I was on multiple daily injections from 1996 until 2016 when I switched to an insulin pump (Animas and later Tandem) and not long after, started on a continuous glucose monitor (CGM) (Dexcom).

Having a CGM truly changed my life as I had developed hypoglycemia-related anxiety by adolescence, and, as a result, chose to miss out on activities as well as keep my blood glucose levels a bit higher than they should have been in an effort to prevent lows. I now have the best control I’ve ever had, but it is not solely because of these medical devices.

If I could teach the public one thing about T1D, I would want them to know that while diabetes technology has come a long way and has definitely facilitated some aspects of diabetes management, the onus for management still lies on the individual with T1D, and it is not as simple as counting carbohydrates and taking insulin.

I owe my great diabetes control to my unrelenting hard work, perseverance, and dedication, as do many other T1Ds – all things I have learned to take great pride in. While some days it’s easy to think, “Why me?”, I’m a firm believer in making the most of the cards you’ve been dealt. As a result, I’ve made the conscious decision to prioritize my health in order to ensure I have the lowest chance of developing complications from things that are within my control. I know that I am the most self-disciplined, patient, and resilient version of myself as a result of my diagnosis and for that I am very grateful.

What has fundraising for JDRF meant to you personally?

T1D is a very isolating condition – you are constantly counting carbohydrates, treating lows, reviewing your Dexcom graphs for patterns, bolusing (insulin administration) for food, correcting highs, planning and making adjustments for exercise, experiencing many sleep deprived nights, coping with the stress of it all…the list goes on. There are truly no breaks – it is on your mind 24/7, 365 days a year. At the same time, it is also a very invisible condition as you likely wouldn’t know someone has it unless you know what an insulin pump or continuous glucose monitor is, and you can visibly see it (or if you see an adult chugging a juice box and know what that means!!).

Fundraising for JDRF makes me feel incredibly loved and supported by all my friends and family who either donate, join my team and walk with me, or even reach out with a kind message of support. It always reminds me that I am not alone in this fight, however isolating it may feel at times, and for that I am so appreciative. I know that I am also greatly benefiting from the investments in research that are being made as a result of the funds raised. 

In honour of my 25th “diaversary”, I decided to walk 25KM over two days, and did this again the following year, walking 26KM. I took the year off in 2023 as I was busy preparing for our wedding but am once again participating in the JDRF Walk to Cure Diabetes this year and will be walking 28KM over two days in honour of my 28th “diaversary” in August. I hope to continue doing this for many years to come.

What are your hopes for the future?

I am not certain that we will turn type one into type none in my lifetime, but I hope T1Ds like myself will continue to benefit from advances in technology – things such as being able to give a bolus from your cell phone (making dress-wearing a lot easier!), more advancements to closed-loop systems, and even smaller and longer lasting CGM sensors. I also hope that there will be increased public education around T1D, which is so commonly mistaken for T2D.

I spent many years feeling ashamed of my diagnosis and often tried to hide my condition because I never wanted to stand out. But as I grew older, I gained more confidence and my mindset changed from wanting to hide to wanting to educate and inspire others, and I hope that reading my story has done just that. 

Alison is celebrating her DiaVersary through JDRF’s Fundraise Your Way program, that lets people fundraise in ways that are meaningful to them. To learn more about her fundraiser: https://jdrf.akaraisin.com/ui/jdrfwalk2024/p/ahuntT1D

JDRF’s Mental Health and Diabetes Strategy – where we are now 

May is Mental Health Awareness month, a national movement to raise awareness of the importance of mental health, and the structural gaps that exist in accessing treatment and support. 

There is no physical health without mental health. JDRF has long recognized the need to prioritize both – particularly as it relates to our mission to improve the lives of people living with type 1 diabetes (T1D).   

T1D affects a person’s emotional, social, and mental wellbeing throughout their lifetime, known collectively as psychosocial health. Psychosocial health is directly related to physical health, and to health outcomes like glycemic control in T1D. JDRF’s Mental Health Strategy, launched in 2021, aims to better support this critical need that has long been underappreciated and undertreated in people with T1D. 

T1D is a lifelong disease that involves constant blood glucose monitoring, counting carbs, fear of T1D related complications, and taking insulin every day just to stay alive. The stress around diabetes management can manifest in depression, anxiety, and “diabetes distress” – a term describing the powerlessness, stress, guilt, relentless worry and denial that accompanies living with diabetes and the burden of self-care.

It is for this reason that JDRF Canada developed a three-pronged approach to its mental health strategy:

Why it matters so much:

I was diagnosed with type 1 diabetes when I was ten years old, and now I’m 19. Even after nine years of living with this disease, I still have daily challenges and struggles. However, I wouldn’t be who I am today without my battle with type 1. I just completed my first year at UBC to gain a bachelor’s degree in psychology. My dream is to become a psychologist for children with chronic illnesses. I believe my personal experience as a child with a chronic illness could benefit and support others in similar situations. I’m so thankful for the inspiring donors who support JDRF, which is working hard to find a cure for all of us affected by T1D. –Shay, diagnosed at age 10

Research Update

JDRF-CIHR Mental Health Grants

Training Mental Health Providers 

JDRF Canada and Diabetes Canada collaborated to launch the Mental Health + Diabetes Training Program in English and French in March 2023. The course consists of two streams: one for mental health providers in Canada – including registered psychologists, clinical counsellors, psychotherapists, social workers, psychiatrists, and mental health nurses – and one for the diabetes community and healthcare providers, caregivers, family members, friends, and anyone who wishes to take the general stream of the course.

Despite the large number of people living with the condition, only a handful of mental health providers in Canada have in depth knowledge of the unique psychosocial challenges that come with living with diabetes. The goal of the Mental Health + Diabetes Training Program is to prepare mental health providers to have sufficient knowledge and skills to assess and treat their patients living with type 1 or type 2 diabetes.

As a contributor to JDRF’s Mental Health + Diabetes Training Program, Lujane shared experiences that impacted her mental health, which highlight gaps in care:

“One night, I was experiencing some troubling symptoms with my T1D and called the endocrinologist on-call at the hospital to ask what I should do. He immediately advised me to go to the hospital. When I went in, the ER doctor looked agitated and tired and questioned why I even came that night. This experience was both positive and negative. I had one physician who cared for my health and listened, and I had another physician who didn’t listen and who made me feel shame.

There is a disconnect in the healthcare system, and people with diabetes often fall between the cracks by being told to take their health seriously and having the onus put on them to make good choices, but at the same time, not having that seriousness and care shown to them. Experiencing this disconnect, on top-of the 24/7 self-management of T1D and fear of complications, takes a toll on your mental health.” –Lujane, diagnosed at age 18

Mental Health + Diabetes Directory

Mental health providers who complete the Training Program can apply to be listed in our bilingual, publicly accessible Mental Health + Diabetes Directory, allowing healthcare providers and people living with diabetes to be referred or self-refer to trained providers who can offer specialized support to youth and adults living with diabetes.

As of April 2024, 124 mental health providers are accepting new clients via our Mental Health + Diabetes Directory across Canada, including Vancouver-based Clinical Counsellor Shalet Rosario, who shares:

“I’ve walked the path of type 1 diabetes since I was 12 years old, and I intimately understand the ups and downs that come with it. I’ve faced the unique challenges and triumphs of this journey, and I’m here to lend an understanding ear and a helping hand to individuals, couples, and families affected by diabetes and who grapple with diabetes-related burnout, psychological trauma, depression, and anxiety.”

Engagement, Education and Support

Our mental health strategy’s engagement, education and support activities focus on health care providers as well as people who live with T1D and their families and caregivers.

Donor funding helps us produce new educational materials for healthcare providers and the T1D community that cover the mental health aspects of diabetes. These include electronic briefs, webinars and events, a dedicated hub on our website, and promotion of the Mental Health + Diabetes Directory among healthcare providers as a referral source for their patients.

Raising Awareness about T1D and

Disordered Eating

In December 2023, we co-hosted a webinar about T1D and Disordered Eating in partnership with the National Eating Disorder Information Centre (NEDIC). More than 500 healthcare providers nationwide and beyond signed up for the English webinar and 80 for the French webinar, highlighting the gaps in knowledge that exist among healthcare providers.

Aude Bandini bravely shared her experience with T1D and bulimia. She went into diabetes ketoacidosis (DKA, a potential life-threatening condition when blood glucose levels are dangerously high) when she was 17, and it wasn’t until age 36 that she noticed her healthcare professionals were finally starting to acknowledge the mental health impacts of T1D.

“Most of the time, I left the physician’s office crying,” Aude shared. “With my diabetes team, the approach was exclusively focused on numbers and glycemic control. I think they thought that through punishment and threats and guilt, I would behave, and of course, it did not work that way.”

Mental Health and T1D Community Grants

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

Each project was awarded up to $20,000 and will be up to 18 months long, supporting: 

• The addition of mental health content to established programming for adults with T1D 
• A virtual mental health training program in Edmonton for people living with T1D
• A bilingual webcomic focused on psychosocial issues for children aged 7-12 newly diagnosed with T1D 
• A French video series that educates and combats stigma around mental health and T1D
• In-person programming for people with T1D of all ages at a busy community health centre 

Partnerships are a crucial component of JDRF Canada’s Mental Health Strategy, and we are proud to be partnering with a variety of organizations across Canada to support these new community projects and expand the capacity and diversity of supports for mental health and well-being in the T1D community. Read more about the projects here: https://jdrf.ca/jdrf-canada-announces-new-projects-supported-by-the-mental-health-and-t1d-community-grants/

What’s next?

With our Mental Health Advisory Council’s input, we will continue to expand our mental health website content, build awareness of our Mental Health + Diabetes Directory so individuals feel empowered to self-refer, and develop new approaches to further educate and connect the community.

JDRF Canada extends our gratitude for the support of our Advisory Council, Cabinet Members and philanthropic partners, including charitable partners Brain Canada and Diabetes Canada.

New funding investments and partnerships are still needed as we go forward. For more information, please email Jen Bavli at jbavli@jdrf.ca.

Looking for more information on available mental health support? Visit our Mental Health + Diabetes Directory  to connect with a mental health provider or visit our website for more information.

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 www.type1better.com.

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.

JDRF’s volunteers are unquestionably the heart and soul of what we do, and we are thrilled to share with you the 2023 JDRF Volunteer Award Winners.

Congratulations to all our Award Winners. To read more about them, please visit: https://www.flipsnack.com/jdrfaccelerate/nvw_2024_flipsnack_english/full-view.html

2023 JDRF Volunteer Awards

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.    

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 50^th 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.