Why we Walk: The Schaub Family shares their story

Receiving a diagnosis of type 1 diabetes (T1D) for their child can be overwhelming for a family. And it was no different for Tienne and Andreas Schaub, when on April 4th 2022, they learned their daughter Leia had T1D.

To honour Leia’s first year ‘diaversary’ (anniversary of her T1D diagnosis date) the family has put together a team for Vancouver’s Sun Life Walk to Cure Diabetes for JDRF, and Leia has the taken on the role of being the BC Ambassador – something the family considers a privilege.

“Over the past year, we have learned a tremendous amount as a family and have adapted to the new lifestyle. Leia continues to be strong and brave every day. From hiding under the table, crying, and refusing to let us give her an insulin injection, to now doing her own finger pokes, knowing how to read her blood glucose levels and what to do when she is having a low, and even prepping the needles for her shots – all amid starting kindergarten. Pretty amazing for a 5-year-old! She is our hero,” say Tienne and Andreas. 

Like many families, the Schaubs recall noticing out of character behaviour from their daughter in the days leading to Leia’s diagnosis.

“We still vividly remember the day she was diagnosed. For the week leading up to it, we noticed that she was always thirsty and going to the bathroom more than usual. She also seemed to be triggered more easily and very emotional. We started looking up the symptoms and everything pointed to diabetes. We thought “that can’t be, right? No one in our family has type 1 diabetes,” remember Tienne and Andreas. 

“On the Sunday before her diagnosis, she became lethargic and just wanted to lie around all day – not normal for a 4-and-a-half-year-old. So, the next day, we brought her to the doctor and within two hours of getting her blood work, we were called to bring her to emergency right away as her blood glucose was in the forties when it should be between 4-8. Those first few hours seemed like days as we watched her cry and yell as she was afraid to get her finger pokes and had to hold off eating and drinking. Her emotions were out of her control due to her high blood glucose levels, and she was screaming and kicking around in her hospital bed. We have never seen her like that before,” they continue.

There are an estimated close to 300,000 Canadians living with T1D – and this number is increasing at an alarming rate.In fact, Canada now has the fifth highest incidence rate of T1D in children aged 14 years and younger in the world, and researchers still don’t know why.

And while Tienne and Andreas recognized some signs and symptoms of T1D that Leia was experiencing, many parents don’t make the connection to diabetes until it’s a medical emergency. The prevailing medical wisdom used to be that T1D developed quickly, with a sudden onset of symptoms. Thanks to advances in screening and a better understanding of the human immune system, we now know that T1D does not develop suddenly but in fact the disease process usually starts long before insulin is required. Because most people do not have a family history of T1D, symptoms and a diagnosis often come out of the blue. In 25-45% of diagnoses in children in Canada, this unexpected diagnosis comes with diabetic ketoacidosis (DKA).

Fortunately for Leia, the family was lucky to have caught her T1D early enough that she did not go into DKA which can be life-threatening and result in a prolonged stay in ICU. They were allowed to go home after a one night stay in the hospital. 

Eventually after the insulin she needed started to kick in, Leia became her normal self again. The family was very grateful to everybody at BC Children’s Hospital for being extremely supportive and helpful in guiding them through those first few challenging days. There were even two clowns who visited the family during their hospital stay that brought a lot of joy to Leia. 

Over the next few days, the family went back to the hospital to learn how to manage type 1 diabetes together. This is a disease that affects an entire family, and the Schaubs along with their extended family approached Leia’s care as a collective.

They quickly came across JDRF and within the first two weeks after Leia’s diagnoses, they received a Bag of Hope, a toolkit with useful resources for children and teens who have been diagnosed with T1D and their caregivers. Along with educational materials, the Bag of Hope includes Rufus, the Bear with Diabetes® — to help show children that they are not alone while learning to take injections and test blood glucose levels.

JDRF also helped to connect Tienne and Andreas with peer support within one week of Leia’s diagnosis, which was extremely helpful to answer all the random questions they had and to talk to another parent who had gone through the same experience. 

Part of the reason why Tienne and Andreas joined the Sun Life Walk to Cure Diabetes is to help educate others who don’t have personal experience with T1D on how much a life and family is changed by a diagnosis, and why funding the research towards cures is so important.

“Leia (or any person with T1D) needs to check her blood glucose level at least 4-5 times a day (before every meal, at bedtime, whenever there are symptoms of a low/high) through finger pokes drawing blood that then gets applied to a glucometer. We did this process for the first few months after diagnosis and often checked her at night as well (midnight and 3am) by doing extra finger pokes to catch a low that might happen overnight and would otherwise go unnoticed. Lots of sleepless nights for us at the beginning and lots of sugar tablets and snacks in the middle of the night for Leia to get her blood glucose back to a safe range,” they explain.

“Now we use a CGM (continuous glucose monitor) which is a sensor that Leia wears on her abdomen 24 hours a day. It allows us to monitor her blood sugar remotely even while she is at school. It will also send us alarms on our phones, so we only need to wake her at night when her low blood glucose alarm goes off.

Still – before each meal, we need to calculate the amount of carbohydrates that Leia will eat and give her insulin shots to match the carbs in her food. That’s 4-5 shots a day and sometimes even more, especially during growth spurts or when she has a cold. There were times where we had to give her 2-3 extra shots at night to correct unexpected high blood glucose levels. It’s a constant balancing act. And there are no breaks, no days off,” they continue.

The family recently did the TrialNet screening to see if there was a genetic component to Leia’s T1D. They were especially worried about their younger son Rudi, as having one child with T1D elevates the risk for siblings to develop the disease as well.

“It’s a big relief to have this screening available as there were several times since Leia’s diagnosis where we were worried or paranoid about Rudi developing T1D and we did finger pokes on him too,” says Andreas.

 TrialNet screens for specific autoantibodies in the blood that make a T1D diagnosis more likely. Fortunately, at the time of screening, all the family’s tests came back negative for these autoantibodies. Research shows that while first-degree family members of T1D are at an elevated risk of developing T1D, like with Leia – around 85-90% of newly diagnosed cases do not have a direct family connection.

It’s been a tumultuous year of learning to adapt to the ‘new normal’ that comes after a T1D diagnosis in a family, but the Schaubs have already made a commitment to giving back and helping the other families who will come after them on this journey with T1D.

Team Leia’s Unicorns has set an ambitious goal of raising $40,000 for type 1 diabetes research, and the family is confident they will reach it.

“We are walking and fundraising with the hope that one day, there will be a cure – not just for Leia – but for every child and every family affected by type 1 diagnosis. JDRF has been with us from day one and has helped us stay positive throughout our journey,” say Tienne and Andreas. They encourage everyone to please support them and the Walk and help to turn type one into type none.

The JDRF-CIHR Partnership to Defeat Diabetes announces 4 new grants in Precision Medicine

Launched in 2017, the JDRF-CIHR Partnership to Defeat Diabetes is a landmark collaboration between the Government of Canada, through the Canadian Institute of Health Research (CIHR) and JDRF Canada for a total combined investment of $30 million to support transformative type 1 diabetes (T1D) research. This Partnership was renewed for a further $30 million through Federal Budget 2021 and through further matched funding from JDRF Canada, now being allocated across three different areas of research: precision medicine, psychosocial health, and screening for T1D risk.

The first of the three funding opportunities has now completed. Complementing previous CIHR and JDRF investments in new T1D research, the CIHR-JDRF Team Grants: Precision Medicine in Type 1 Diabetes was designed to support multi-disciplinary research that would accelerate precision medicine approaches for prediction, prevention, and treatment of T1D. 

The goal of precision medicine is to get the right treatment to the right person at the right time.

Precision medicine approaches for T1D may integrate data about genetic, molecular, and environmental factors to improve T1D diagnosis, care, treatment or prevention. A greater understanding of how a person’s individual characteristics ‒ including genetics, biomarkers and immune and beta cell dysfunction ‒ contribute to T1D risk and progression may lead to more precise therapeutic targets, better characterization of disease risk and how it may progress in an individual, improved opportunities for safe and effective intervention and, ultimately prevention of T1D. 

These grants, worth $3.5 million each, have been awarded to four teams across Canada.

Precise Treatment for Pediatric Diabetes: Providing the right care, for the right patient, at the right time, over time 

Dr. Shazhan Amed (University of British Columbia), along with her team Dr. Mark Clements (Children’s Mercy Hospital), Dr. Tricia Tang (UBC), and Dr. Wyeth Wasserman (UBC). 

Dr. Amed and her team will use this grant to fill the information management gap in pediatric T1D care. TrustSphere will be the ‘one trusted place’ for kids with T1D that brings them, their families, and their healthcare providers together to manage their diabetes information and provide the right care to the right patient at the right time. Patients, families, and their healthcare providers will have access to important diabetes information, like blood sugars and insulin doses streaming from glucose sensors and insulin pumps, or recommendations from the diabetes team – all in one digital tool. 

Through collaboration with endocrinologists, mental health experts, and patient partners, TrustSphere will be expanded to include healthy living behaviours, diabetes self-management behaviours, quality of life and mental health. With patients and families, the research team will co-create personalized and tailored care experiences and use advanced methods to analyze data like machine learning to navigate patients and families to the care they need, when they need it.  

The team’s goal is to create a collaborative care experience, improve diabetes self-management, and ultimately improve lives for children and youth with T1D.

EVERYONE: Empowering diverse youth with diabetes through precision medicine 

Dr. Farid Mahmud (The Hospital for Sick Children; SickKids), along with his team Dr. Samantha Anthony (SickKids), Dr. Funmbi Babalola (London Health Sciences Centre), Dr. Andrew Paterson (SickKids), and Dr. Diane Wherrett (SickKids). 

Dr. Mahmud’s overall research focus is diabetes clinical research, relating to the early evaluation and prevention of diabetes-related complications and the impact of the social determinants of health on diabetes outcomes. In this JDRF-CIHR funded grant, he and his team will examine the impact of diversity (genetics, race, sex, gender, income, family support, mental health, etc.) on diabetes management in youth by applying artificial intelligence approaches. The experiences and barriers faced when receiving diabetes care will be gathered through interviews and feedback from youth with T1D and their families.  Armed with this information, the team will develop individualized treatment strategies that consider patient diversity and conduct a clinical trial to determine the feasibility, acceptability, and appropriateness of the program. 

The EVERYONE study will contribute to a greater understanding of the physiologic and social factors underlying diabetes outcomes, and the opportunity to personalize and optimize care to improve lives for children and youth with T1D.

Leveraging biological sex and genetics for beta cell-directed precision medicine in type 1 diabetes 

Dr. Elizabeth Rideout (University of British Columbia), along with her team Dr. James Johnson (UBC), Dr. Dan Luciani (UBC), Dr. Peter Thompson (University of Manitoba), and Dr. Bruce Verchere (UBC). 

Dr. Rideout’s research investigates the effect of biological sex on metabolic genes and pathways. In this JDRF-CIHR grant, her team will apply this work to T1D by examining how beta cell dysfunction differs between biological males and females during the progression of T1D. Rates of T1D are higher in biological males than females, and there is evidence of sex-specific responses to insulin and beta cell functioning in T1D.  Despite this, most T1D studies have used only male animal models and participants, and of those that did use both sexes, most failed to compare data between the sexes.  

Dr. Rideout and her team will examine beta cell function between males and females, which will inform T1D prevention and treatment strategies that account for the impact of biological sex. 

Spatio-temporal dynamics of immune and non-immune islet injury in type 1 diabetes

Dr. Peter Thompson (University of Manitoba), Dr. Herbert Gaisano (University of Toronto), Dr. Guy Rutter (Université de Montréal), Dr. Pere Santamaria (University of Calgary) 

Dr. Thompson’s research focuses on the heterogeneity (individual differences) of beta cells within an islet and how individual cells may respond differently to immune system attacks and stressors. T1D varies greatly between individuals in terms of time to onset, rate of progression, and insulin requirements, but the reasons underlying these differences are unknown. This team grant will investigate the functional “hierarchies” that appear to be present amongst beta cells. Specifically, the team will look at “leader” or “hub” beta cells within an islet that are guiding and coordinating the function of the rest of the cells.  

Through this information, the team will understand the variability in beta cell loss amongst individuals with T1D, which will inform development of disease-modifying therapies and cell therapies for T1D.  

JDRF is very excited to support these cutting-edge research projects that will help further the understanding of T1D’s disease mechanisms and ideally lead to more advanced treatments, therapeutics, patient outcomes and prevention of T1D.

JDRF Canada celebrates International Women’s Day

International Women's Day

Wednesday, March 8 is International Women’s Day (IWD), recognized around the world. IWD asks us to imagine a gender equal world. One that is free from bias, stereotypes, and discrimination. A world that’s diverse, equitable, and inclusive. A world where difference is valued and celebrated. The theme for 2023 is #EmbraceEquity and calls upon us to celebrate women’s achievements, raise awareness about discrimination and take action to drive gender parity globally.

JDRF is proud to celebrate the achievements of the Canadian women researchers who have blazed a trail in the field of type 1 diabetes (T1D) – both making life better, safer and easier for the millions affected by the disease, but also for all the women scientists who came after them.

From Dr. Priscilla White, an early pioneer in diabetes research and treatment, Dr. Dorothy C. Hodgkin who discovered the three-dimensional structure of insulin, Dr. Helen M. Free, who along with her husband created Clinistix, allowing people to check their glucose at home – to the mothers who helped found JDRF, women have played a critical and essential role in advancing our understanding of T1D.

Meet these women researchers whose work is helping to improve the lives of people affected by T1D today, while getting us closer to cures tomorrow:

Dr. Diane Wherrett – accelerating screening for T1D prevention. Dr. Diane Wherrett is currently a Staff Physician in the Division of Endocrinology, Department of Paediatrics, and a Professor at the University of Toronto at SickKids. She is the Centre Director for the Canadian arm of the TrialNet screening program, a NIH-funded multicentre T1D clinical trial group.

TrialNet offers risk screening for relatives of people living with T1D, and innovative clinical studies testing ways to slow down and prevent disease progression.

Dr. Despoina Manousaki, helping to create genetic risk scores for T1D. Dr Manousaki’s research focuses on the genetics of complex disease in childhood. Her team uses genomics, bioinformatics, and genetic epidemiology methods to better understand the genetic architecture of complex disease, and to apply these findings in translational research.

Her research program focuses on the genetics of type 1 and type 2 diabetes in children and is expanding existing genetic risk scores for T1D calculated from predominantly European-ancestry datasets, to include African, Indian, Latino, and Asian ancestries for a more diverse picture of T1D genetics.

Dr. Megan Levings – helping to find a better understanding of T1D immunology.

Dr. Megan Levings, of the University of British Columbia and BC Children’s Hospital Research Institute is one of Canada’s leading immunologists. She holds two JDRF grants: one examines samples from the ustekinumab (a disease-modifying drug) clinical trial to understand how the drug works in people with T1D. The hope is that ustekinumab (brand name Stelara) can block immune cells soon after the development of diabetes to protect and regenerate any remaining insulin-producing cells. This would ideally lead to the remaining beta cells producing enough insulin so that people with T1D would require less external insulin for a longer period, or not at all.

The other is a CIHR-JDRF grant that is examining the role of regulatory immune cells to apply novel approaches to  the development of cellular therapies to cure the disease.

Dr. Christine Nostro – forging new pathways in stem cell research for T1D.

Islet transplantation could help T1D patients regain control of blood glucose 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 for life-long immunosuppressive treatment to prevent transplant rejection mean this treatment is only accessible to a handful of people with T1D.

Dr. Nostro’s team leverages their expertise in stem cell biology, vascular biology, islet transplantation and beta cell biology to address these challenges and are working to develop a safe and effective clinical-grade product for therapy.

The outcome from these studies will accelerate universal stem cell based T1D therapies.

Dr. Tricia Tang – making mental health support for T1D more accessible.

Dr. Tricia Tang is an Associate Professor in the Department of Medicine, Division of Endocrinology at the University of British Columbia Faculty of Medicine. She is also a behavioral scientist and registered clinical psychologist with an expertise in diabetes research in high-risk and medically underserved populations. Over the past 22 years, she has focused on developing, implementing, and evaluating low-cost and sustainable peer support models for improving long-term diabetes-related health outcomes.

Dr. Tang seeks to use digital health strategies and peer support models to close the mental health care gap for people with T1D.

Dr. Tang’s research goal is to design and evaluate a virtual care platform (REACHOUT) for highly trained peer supporters to deliver psychosocial support to adults with T1D living in rural and remote communities of interior British Columbia.
She is also the co-chair of JDRF’s Mental Health + Diabetes steering committee, helping to develop a training program for mental healthcare professionals to better serve their patients with T1D.

Dr. Shazhan Amed – developing new projects that aim to equitably improve outcomes for children with diabetes.

Dr. Shazhan Amed is a pediatric doctor who works at BC Children’s Hospital in Vancouver. Her areas of care are children and youth with diabetes. She is particularly interested in improving the quality of care provided to children with diabetes, as well as preventing childhood obesity and childhood onset type 2 diabetes.

Her team has developed the CAnadian PediAtric diabetes ConsortIum (CAPACIty), a network of 15 childhood diabetes centers from across Canada, with the collaborative goal of improving outcomes for all children with diabetes, particularly those from marginalized or lower-income communities.

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

JDRF Canada – an all-women research department.

Chief Scientific Officer Dr. Sarah Linklater, along with her team Dr. Lara Green, Katie Ryan, and Dr. Anne Marie MacDonald (currently on maternity leave), use their science backgrounds and passion for accelerating type 1 diabetes research – that also may benefit other autoimmune diseases – to help JDRF determine the most promising research to fund. JDRF is so grateful for their efforts that are bringing us closer to our goal of a world free from T1D.

Exciting news: new drug in clinical trials shows slowed type 1 diabetes progression in newly diagnosed children and teens

A new JDRF International-funded study of a drug called verapamil is offering exciting new potential for a path to keeping beta cells healthier for longer in people with type 1 diabetes (T1D).When a person is diagnosed with T1D, they still have some remaining beta cells that continue to insulin for a few months – known as the  “honeymoon” phase. The new trial looked at whether the effects of a hybrid closed loop system (also known as an artificial pancreas system or automated insulin delivery system) and/or verapamil preserved beta cell function – and extends the honeymoon phase – one year after diagnosis in children and teens with T1D.

Verapamil is a drug currently prescribed for conditions like angina or high blood pressure.

The study found that newly diagnosed individuals on verapamil were making more insulin one year after diagnosis than those on placebo, with the average C-peptide, which is used to measure insulin production by beta cells, being 30% higher for the verapamil group compared to placebo. HbA1c was 6.6% in the verapamil group versus 6.9% in the placebo group, at one year.

There was no change, however, in the hybrid closed loop system arm. But participants using the hybrid closed-loop system showed improved glucose control and management, which can reduce potential diabetes-related complications.

Verapamil would be a once-a-day oral therapy (pill taken by mouth) and is already being manufactured, making it a cost-effective solution as well.

What does this mean for people with T1D?

Verapamil is not an approved therapy for newly diagnosed people with T1D, and it still must undergo further study to validate these results, ensure safety and efficacy, as well as learn if there are any potential side effects for people with T1D. Additionally, further trials must determine the long-term effects of the drug, if the preserved beta cell function lasts, and for how long.

What comes next?

JDRF International has been funding the study of verapamil for over ten years. The next step is to ascertain longer-term evidence of verapamil’s effectiveness and share this data with the clinical community and other health care leaders.

In the immediate term, JDRF International has a grant for a follow-up study for three years to see if C-peptide benefits persist. They are also funding several clinical trials to validate the results of this study and see if verapamil is effective when used in conjunction with other disease-modifying therapies, such as the recently approved Tzield™ (teplizumab-mzwv).

JDRF Canada will continue to monitor the results of this work, and report on further updates as they become available.