Over 300 participants took part in the study, with 217 receiving teplizumab and 111 receiving a placebo treatment. The results showed:
TZIELD was effective at helping to keep the beta cells working better, as shown by something called C-peptide, which is a measure of how well beta cells are functioning.
Participants taking TZIELD needed slightly less insulin, and had slightly improved time-in-range compared to the placebo group, however, these results weren’t statistically significant.
Tzield has the potential to slow the progression of Stage 3 T1D in newly diagnosed individuals
“This new study shows that Tzield can slow down the autoimmune attack on insulin-producing beta cells in children and adolescents newly diagnosed with T1D,” said Sarah Linklater, PhD, JDRF Canada’s Chief Scientific Officer.
“This is new evidence that we can successfully intervene during this window of opportunity right after diagnosis – a critical step towards cures. Slowing down progression also provides important health benefits for individuals with T1D in the short- and long term. We applaud Provention Bio and Sanofi’s ongoing dedication to advancing disease-modifying therapies for individuals with T1D. JDRF continues to support a large amount of research on disease-modifying therapies as there is enormous potential for these types of treatments to benefit people living with the condition.”
JDRF has supported the development of teplizumab for nearly 30 years, which includes contributions through research grants, federal funding via the Special Diabetes Program, a strategic investment by the JDRF T1D Fund that brought Provention Bio into T1D for the first time, and more.
Currently, TZIELD is only approved in the U.S. by the FDA for use in individuals with stage 2 T1D (pre-diagnosis), which is identified via screening. The use of TZIELD in individuals within 6-weeks of T1D diagnosis (within stage 3) has not been submitted for approval to any regulator.
JDRF Canada will continue to monitor ongoing news of Tzield and will provide updates as they become available.
Training the next generation of researchers and clinicians in type 1 diabetes (T1D) is a central goal of JDRF’s global research strategy. Support of these emerging leaders is essential to ensure continued momentum in T1D research, and to facilitate translation of today’s evidence into tomorrow’s improved treatments and cures. JDRF seeks to attract and retain the brightest minds into the T1D field throughout their journeys to becoming independent researchers.
Research trainees are typically considered any researchers who are not yet independently conducting research. This can include students pursuing master’s degrees or Ph.D.’s, postdoctoral fellows, or junior clinician researchers. Trainees are in many ways the engine that drives research forward, as they are often the ones actively conducting the hands-on research activities in the lab or interacting with patients in the clinic.
The process
The journey to becoming an independent researcher can be long and challenging – and requires substantial funding to support. After a bachelor’s degree, which takes 3-4 years of undergraduate university courses, a trainee can enroll in a research-based master’s degree. This is typically 2-3 years and consists of coursework, independent research overseen closely by a supervisor (a university professor in a faculty position), and a thesis project. Some programs allow a master’s student to transition to a Ph.D. program after 1-year, otherwise PhD enrollment occurs following completion of a master’s degree. In Canada, a Ph.D. program is 4-5 years where students delve deeply into a specific research area, conducting original research, collaborating with mentors and peers, and presenting their findings at conferences. They complete coursework, pass comprehensive exams, and write a dissertation that contributes new knowledge to their field.
JDRF currently funds 6 PhD students through the Canadian Islet Research Training Network (CIRTN). These students are mentored by renowned researchers in T1D, further enhancing Canada’s reputation for islet research and helping to secure the future of research.
“JDRF Canada has long been a leader in supporting diabetes research, and also in ensuring that the next generation has the skills to positively impact diabetes research, treatment, and knowledge mobilization. The Canadian Islet Research and Training Network (CIRTN) is fortunate to partner with JDRF Canada to support enhanced training opportunities for graduate students and postdoctoral fellows who both contribute to important diabetes research through their work and represent future leaders in diabetes research in Canada.” – Patrick MacDonald, PhD, Professor at University of Alberta and lead of the Canadian Islet Research and Training Network (CIRTN)
After obtaining a Ph.D., many researchers pursue postdoctoral fellowships to gain the additional specialized training and expertise that is required before they can land a tenure-track position in academia, a clinician-scientist position in a research hospital, or a position as a staff scientist at a company. These fellowships can last from 1-5 years. Postdocs work closely with established researchers in a specific lab or institution, honing their research skills, expanding their scientific network, and producing high-impact research publications.
“JDRF fellowships transformed my scientific career, empowering me to pursue my research ideas, connect with the T1D community and ultimately propelled me onto a career path of innovation with the goal of improving the lives of people living with T1D.” – Heather Denroche, PhD, Director of Preclinical Development, Integrated Nanotherapeutics, Inc. and past holder of a JDRF Advanced Postdoctoral Fellowship
Research trainees may also be on the pathway to becoming a clinician-scientist (i.e., a practicing physician that also conducts research). In this case trainees will complete a bachelor’s degree, medical school, and then during their residency training they can do research fellowships or a clinician investigator program. They will split their time between clinical training and research training, often towards the pursuit of a master’s or Ph.D. (alongside their M.D.).
The contribution
Not only do trainees conduct much of the hands-on research that is led by an independent researcher, but they often bring new skills, fresh perspectives and innovative ideas to the lab. Their diverse backgrounds, experiences, and viewpoints can lead to novel approaches and creative solutions to research questions. Trainees contribute by conducting comprehensive literature reviews to stay up-to-date with the latest developments in their field. They analyze existing research to identify gaps, refine hypotheses, and design experiments that build upon previous work. Trainees often manage specific projects within the lab and play an essential role in publication of the research (i.e., manuscripts or journal articles). As trainees progress in their careers, more experienced trainees may take on mentorship roles for newer members of the lab. They provide guidance, support, and training, fostering a culture of learning and growth. Trainee positions are typically funded from research grants, fellowships, and awards. JDRF supports trainees in many ways – through dedicated awards specifically given to trainees for salary and research support, research grants to established researchers that are often used to support the trainees conducting the awarded research, and by partnering with programs such as CIRTN to extend government funds to trainees.
In 2022, donor funding supported over 40 research grants via JDRF. These funds largely support the primary costs of research – personnel. Over the approximately 40 grants, JDRF funds supported: · 33 postdoctoral fellows; · 47 PhD students; · 21 Master’s students; and · 15 professional trainees including laboratory technicians.
“Trainees are the lifeblood of laboratory research, driving innovation and expanding the horizons of scientific discovery. Having been involved with JDRF’s fundraisers since my childhood diagnosis of T1D, and now being a trainee in a JDRF-funded laboratory, I understand firsthand the immense value of their unwavering support. Research funding from organizations like JDRF is pivotal in not only sustaining but also nurturing the next generation of scientists at the heart of the laboratory. This unique privilege, coupled with my deep personal connection to JDRF, has not only enriched our scientific endeavors but also fuels the promise of a future where breakthroughs in diabetes treatment and prevention are well within our reach.” – Lindsay Pallo, PhD Candidate at the University of British Columbia funded in part by the JDRF Centre of Excellence and research grants to supervisor Dr. Bruce Verchere.
Career Development
While research is the central focus for trainees, career development and mentorship are integral parts of training. The eventual goal is for a trainee to establish an independent research position, whether that is as a university professor, a clinician scientist, or working within industry and private research.
The transition from trainee to independent position can be very difficult. Research funding is primarily obtained through competitive grants that rely on a past history of research funding – success begets success. JDRF helps to support this transition by funding newly independent researchers with Career Development Awards. These multi-year awards support the investigators newly independent research program, with support for new equipment, resources, and salary support where needed. In the case of clinician-scientists awards (ECRA), the funding protects the investigators time for research activities so that they can dedicate their limited resources to research rather than clinical practice while getting established.
“With the critical support of JDRF, my laboratory will strive to preserve the legacy of the Edmonton Protocol while ushering in a new era of cellular transplantation,” Andrew Pepper, PhD, Assistant Professor in the Department of Surgery at the University of Alberta and recipient of a JDRF Career Development Award.
“I believe our research will identify areas for improvement for governments, health care providers, and those living with type 1 diabetes. I hope we may see some policy changes to make technologies easier for all to access.” – Alanna Weisman, MD, PhD, Endocrinologist and Clinician-Scientist, Leadership Sinai Centre for Diabetes; Assistant Professor at the University of Toronto
Why put donor dollars towards training?
Funding trainees is one of the greatest ‘bang for our buck’ investments JDRF can make! Trainee contributions to ongoing research is invaluable, and JDRF’s carefully selected trainees often become future superstars in the T1D field, who go on to mentor their own outstanding trainees. By funding trainees and encouraging them to stay within the field of T1D research, your dollars are helping us ensure that the future of T1D research is bright.
To support these future leaders of T1D research, please contact Jen Bavli at jbavli@jdrf.ca
For more information on JDRF Canada supported research trainees, please contact research@jdrf.ca
Director of Preclinical Development, Integrated Nanotherapeutics, Inc. Developing new nanomedicines to treat immune diseases such as T1D.
Dr. Adriana Migliorini
Advanced Postdoctoral Fellowship (2018-2021)
Research associate, McEwen Stem Cell Institute (University Health Network) Developing human pluripotent stem cells as a source of insulin-producing cells for people living with T1D.
Dr. Dan Luciani
Career Development Award (2013-2019)
Associate professor, University of British Columbia researching stem cell-derived beta cells
Career Development Fellow, University College London, UK Researching autoimmune function in arthritis and T1D.
Dr. Yasaman Aghazadeh
CCTN Postdoctoral Fellowship (2016-2017)
Assistant Professor, Institut de recherches cliniques de Montréal (IRCM)
Dr. Ahmad Haidar
Postdoctoral Fellowship (2013-2016)
Associate professor, McGill University Researching diabetes technologies and insulin therapies
Dr. Francis Lynn
Postdoctoral Fellowship (2007-2010) & Career Development Award (2011-2016)
Associate professor, University of British Columbia; Investigator, BC Children’s Hospital; Research Lead, JDRF Centre of Excellence at UBC Stem cell therapies for T1D cures.
Dr. Emmeline Heffernan
CCTN Postdoctoral Fellowship (2014-2016)
Pediatrician, Royal Belfast Hospital for Sick Children
Dr. Kate Verbeeten
CCTN Postdoctoral Fellowship (2018-2019)
Pediatric endocrinologist, private practice, Toronto
Dr. Ashish Marwaha
CCTN Postdoctoral Fellowship (2014-2015)
Assistant Professor, University of Calgary, geneticist researching basic immunology and member of CanScreenT1D: JDRF-CIHR Screening Research Consortium
Dr. Jennifer Bruin
Postdoctoral Fellowship (2011-2015)
Associate Professor, Carleton University Environmental factors affecting T1D development
Dr. Pat MacDonald
Career Development Award (2009-2014)
Professor, University of Alberta; Canada Research Chair in Islet Biology; Director of Alberta Diabetes Institute IsletCore; lead of the Canadian Islet Research and Training Network (CIRTN) researching insulin production from islet cells
Dr. Reza B. Jalili
Postdoctoral Fellowship (2011-2014)
Director of In Vivo Sciences, Aspect Biosystems Developing immunoprotective biomaterials.
Dr. James Surapisitchat
Postdoctoral Fellowship (2010-2012)
Regional Medical Scientific Director of Oncology at Merck Pharmaceuticals
Dr. Majid Mojibian
Postdoctoral Fellowship (2010-2012)
In Vivo Modelling Lead, BC Children’s Hospital Research Institute
Dr. Pedro Geraldes
Advanced Postdoctoral Fellowship (2009-2012)
Professor, Université de Sherbrooke; Canada Research Chair in Diabetes and Vascular Complications
Dr. Sylvie Lesage
Career Development Award (2008-2011)
Professor, Université de Montréal researching genetics of immune system cell populations
Dr. James Johnson
Career Development Award (2005-2010)
Professor, University of British Columbia; Research Lead, JDRF Centre of Excellence at UBC researching islet biology
Dr. Cristina Nostro
Postdoctoral Fellowship (2008-2010)
Senior Scientist at the McEwen Stem Cell Institute (University Health Network); Associate Professor, University of Toronto. Stem cell therapies for T1D cures.
Dr. Lucy Marzban
Postdoctoral Fellowship (2005-2007)
Associate professor, University of Manitoba researching beta cell death
Dr. Tim Kieffer
Career Development Award (2001-2006)
Professor, University of British Columbia researching stem cell-derived beta cells
Dr. Gregory Korbutt
Career Development Award (2000-2005)
Professor, University of Alberta; Scientific Director, Alberta Cell Therapy Manufacturing Facility; and a member of the original Edmonton Protocol team.
Dr. Janette Dufour
Postdoctoral Fellowship (2001-2003)
Professor, Texas Tech University Researching protective options for islet transplantation cells
Hamilton, ON, Canada and New York, NY – On October 3, 2023, Allarta Life Science, a Hamilton, Ontario-based regenerative medicine company announced it has received an award from JDRF International (JDRF Canada’s parent organization), that could amount to US$800,000 upon completion of research and development milestones.
Allarta was co-founded in 2019 by McMaster University Chemistry Professor Dr. Harald Stover and STEM leader Maria Antonakos, MBA, and uses polymer science and novel hydrogels to advance cell therapies for type 1 diabetes (T1D).
A large area of cure based T1D research is investigating cell therapy. The goal of cell therapy is to replace beta cells that are destroyed in a person with T1D, thereby allowing them to produce insulin again. This would lessen or eliminate the amount of external insulin required by someone living with T1D (either by injection, pen, or pump) for years or even decades.
One of the primary hurdles to cell therapies becoming a reality for people with T1D is the need for ongoing, systemic immunosuppression medication (similar to an organ transplant like a kidney or liver). To solve this problem, Allarta has developed a hydrogel platform that offers immune protection for transplanted beta cells. Allarta’s competitive advantage lies in its synthetic hydrogels designed to allow good metabolic connection of transplanted cells while protecting them from the hosts’ immune system.
The grant will directly fund Allarta’s ongoing work to increase durability and avoid the need for systemic immune suppression in current islet and beta cell transplantations to cure T1D. Pre-clinical studies will be conducted with porcine islets and stem cell-derived beta cells to determine if they can survive without immunosuppression.
“Protecting transplanted cells from immune rejection without the use of chronic systemic immunosuppression remains one of the primary barriers to the broad application of islet cell therapies to cure type 1 diabetes. Addressing it is a key priority for JDRF so that these therapies can be fully implemented,” said Jaime Giraldo, Ph.D., Associate Director of Research at JDRF International. “Allarta’s approach is well-aligned with our research strategy, and we look forward to working with them on testing the ability of these unique materials to protect implanted insulin-producing cells following transplantation.”
JDRF Canada is very excited to see a Canadian company as the recipient of this industry grant and one at the forefront of cutting-edge stem cell technology as a possible cure for type 1 diabetes. We will report on any results of the pre-clinical studies as they become available.
-30-
About JDRF Canada JDRF Canada is the leading charitable organization funding type 1 diabetes (T1D) research in Canada. Our mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. We are an organization built on a grassroots model of people connecting in their local communities, collaborating regionally for efficiency and broader fundraising impact, and uniting on a national stage to pool resources, passion, and energy. We collaborate with academic institutions, governments, and corporate and industry partners to develop and deliver a pipeline of innovative therapies to people living with T1D. Our staff and volunteers throughout Canada and five international affiliates are dedicated to advocacy, community engagement and our shared vision of a world without T1D. For more information, please visit jdrf.ca
Media Contact: Ruth Kapelus National Content and Media Relations Manager, JDRF Canada T. 647.789.2322 E. rkapelus@jdrf.ca 235 Yorkland Blvd., Suite 1201 Toronto, ON M2J 4Y8 jdrf.ca
Semaglutide, brand names Ozempic®, Rybelsus®, and Wegovy®, is all over the news. It is Health Canada-approved to help people with type 2 diabetes (T2D) manage their blood glucose levels. It also decreases the risk of cardiovascular events and helps with weight loss. According to a recent commentary published in the New England Journal of Medicine [subscription required] by investigators at the State University of New York at Buffalo, it may also help newly diagnosed individuals with type 1 diabetes (T1D) make more insulin.
What Is Semaglutide?
Semaglutide is a peptide similar to naturally occuring glucagon-like peptide (GLP-1). It helps people with T2D in various ways, including by stimulating insulin production. These drugs have been on the market since the early 2000s.
Thanks to decades of JDRF-supported research, we know that most people diagnosed with T1D still have some functioning beta cells. They no longer make the amount of insulin needed by the body to function, but they do exist.
Preserving those beta cells, keeping them healthy and alive and, eventually, increasing their number and function through disease-modifying therapies is one of JDRF’s key priority areas when funding research.
Study Results
The researchers in this study, who currently receive JDRF funding (via JDRF International in the United States) to investigate the use of semaglutide later in disease to assist with glycemic control, administered the drug to 10 individuals. These individuals were between the ages of 21 and 39 in stage 3, or new-onset T1D. They began treatment with semaglutide within three months of diagnosis with the goal of preserving beta cell function. Nine individuals tested positive for GAD, an antibody which can indicate the presence of autoimmunity for T1D; one tested positive for IA-2, another T1D autoantibody. Over the course of several months, all 10 individuals no longer had to administer insulin at mealtimes and six of the participants no longer needed basal insulin after six months. Additionally, participants saw an increase in C-peptide, which shows that their bodies were making more insulin after being on the therapy.
What Comes Next
These results are exciting, but much more work is needed.
The study raises additional questions for researchers. What effect does using semaglutide to increase insulin production by the remaining beta cells have on these cells? It’s possible that it may add further stress to these cells. Researchers still need to determine what the effect of this stress will be beyond the length of this study. Will the beta cells continue to produce insulin or will insulin production decline as it does typically with T1D? All of this must be investigated in a larger, follow-up study with a control group.
GLP-1s Are a Priority for JDRF
JDRF has been a central player in the discovery and development of GLP-1s for decades, and funded many studies to better understand this hormone, how it functions, and how it can be used to help people with T1D. JDRF believes semaglutide has tremendous promise to improve glucose control and mitigate heart and kidney complications for individuals in stage 4, or established T1D.
That work continues today. There are several JDRF-funded clinical trials to see how people with established T1D can benefit. This includes research led by Dr. Viral Shah at the Barbara Davis Center at the University of Colorado—and in collaboration with three other leading diabetes centers (Henry Ford Hospital, Iowa Diabetes, and the Oregon Health & Science University)—which is investigating ways semaglutide may benefit people with T1D and obesity who are using artificial pancreas (AP) systems.
There are currently no T1D semaglutide trials active in Canada.
These drugs are also being explored by the JDRF T1D Fund. T1D Fund portfolio company i2O Therapeutics is developing several products leveraging GLP-1s, initially for T2D, including a refillable, implantable GLP-1 device that delivers 6 months’ worth of the hormone, an oral form of long acting GLP-1, as well as a combined oral GLP-1 with Amylin (another important pancreatic hormone).
Additionally, Code Bio, a T1D Fund portfolio company, has explored GLP-1 to target beta cells for targeted drug delivery.
JDRF Canada will continue to monitor results of GLP-1 studies and report on findings as they become available.
The JDRF Canada Emerging Clinician Research Award (ECRA) is designed to provide crucial support to investigators who plan to pursue a career in type 1 diabetes (T1D)-related clinical investigation. Awards are made in the late stage of training or early career to support the development of the awardee’s independent research program.
These awards are given to clinicians who have demonstrated superior scholarship and show the promise for future achievement in clinical research, particularly in those areas that require the unique training of a clinical investigator. An important focus of these awards is the development of a patient-oriented research program and the mentorship of the awardee by an experienced clinician-scientist.
Dr. Weisman’s research focuses on the use of diabetes technology (such as insulin pumps and continuous/flash glucose monitors) across Canada. Her primary focus is examining the rates of diabetes technology use among people from historically marginalized communities and identifying barriers to use that can be addressed.
Dr. Weisman has published more than 40 primary research articles in peer-reviewed journals to date. The award is $400K over four years and will support Dr. Weisman as a clinician-scientist. Her research will also have implications on JDRF’s Access for All program, which advocates both provincial and federal governments for greater access to diabetes devices and technology and more research funding for T1D.
JDRF had the chance to speak with Dr. Weisman to learn more about her research and how it will potentially impact people living with T1D.
What started your interest in type 1 diabetes?
What first sparked my interest was one of my mentors, Dr. Bruce Perkins. Early on when I was training to become an endocrinologist, I worked with Dr. Perkins on some of his research projects in type 1 diabetes and these experiences convinced me that I wanted to pursue a career as an endocrinologist and a researcher. I was drawn specifically to type 1 diabetes through my experiences in clinic seeing patients who live with type 1 diabetes. There were and continue to be many challenges for people living with type 1 diabetes that are unique to those of type 2 diabetes, and I felt there were many areas where we could improve.
Can you please describe your current field of T1D research?
My research is currently focused on two major areas. The first area relates to the widespread recommendation that adults with type 1 diabetes meet a specific blood glucose target (a Hemoglobin A1c value of 7.0% or lower). I have been analyzing health care data in Ontario for large numbers of adults with type 1 diabetes to determine what are the trends in Hemoglobin A1c over time, and trying to understand the factors that drive this gap we see between what is being recommended and what actually happens in the real world. The second area is focused on understanding how technologies like insulin pumps or continuous glucose monitors are being used in Canada and how this relates to different funding policies for these devices.
What are some of the existing barriers to diabetes technology in marginalized communities?
This has not been studied yet in Canada, and it is important to do so because of our unique health care system. In other countries, some of the barriers have been the costs of these devices, lack of access because of where someone lives or the type of diabetes team they see, or the devices not being recommended in the first place because of preconceived ideas about who would be able to use technologies or not.
What novel interventions to improve outcomes for people living with diabetes do you foresee emerging from this research? I believe our research will identify areas for improvement for governments, health care providers, and those living with type 1 diabetes. I hope we may see some policy changes to make technologies easier for all to access. I expect we will develop new tools and strategies for health care providers and patients that we can incorporate into clinics to increase awareness of the benefits of diabetes technologies and make them easier to use.
The following is a guest blog by Ryan MacDonald, volunteer co-chair of JDRF Canada’s $100M Campaign to Accelerate – JDRF’s bold fundraising campaign to raise $100M by 2025 to accelerate research to defeat the monster known as type 1 diabetes (T1D). Generous donor support is fueling our campaign to help us reach our goal. Ryan provides an update below and shares why he volunteers with JDRF.
Why I Co-Chair the $100M Campaign to Accelerate
My name is Ryan MacDonald, and I am a dad to a son with type 1 diabetes. Luke, now 13, was diagnosed when he was just five. It was a time in our lives we will never forget. His little body was not acting normal, and we didn’t know why until the doctors gave us the devastating news. Luke had T1D, immediately launching us into a new reality full of unknowns, injections, constant monitoring, and worry. Our family has been involved with JDRF and the T1D community ever since. It’s not a community we asked to be a part of, but we are so grateful for the support, for teaching us resilience, and for our collective ambition to find a cure. Luke and those living with T1D inspire me every day with their bravery which is one reason I am so committed to working with JDRF to find a cure.
One incredible T1D family in this community is the Oliver family. Peter Oliver was my campaign co-chair, confidant, and friend. It was truly an honour to co-chair the campaign with Peter for over two years before he sadly passed away in 2022. Peter had a charismatic and sincere energy that motivated everyone to work even harder to find cures for this disease. He was a T1D father too, driven to create a better future for his daughter, Vanessa, who is also a lead campaign volunteer.
Like the original founders of JDRF in the 1970s, we are a group of families and T1D community members whose lives are forever changed by this 24/7 disease and who want nothing more than to exceed our $100M goal and accelerate a cure. Peter never slowed his fundraising efforts in more than 30 years, and we will carry on his meaningful legacy. For Peter and the 300,000 Canadians impacted by T1D, I am committed to helping JDRF and my fellow volunteers exceed our campaign goal. This is a promise we will keep for Peter and for everyone living with T1D.
Where We Are Now
Generous donors helped us achieve incredible early campaign success. Industry leaders stepped forward to spearhead challenges in the commercial real estate and wealth management sectors, galvanizing corporate Canada. Let’s Make History Again raised critical awareness and record-breaking donations for JDRF. Temerty Foundation’s gift of $10M, the largest single donor contribution to T1D research, helped bring us to the over $72M raised as of today. This nationwide effort is a tremendous testament to the community, and we are so grateful.
But now, it’s time to challenge ourselves again.
We need our community’s continued support. The $100M Campaign to Accelerate is a major gift campaign, meaning the $100 million will be raised through gifts of $5,000 or more to ensure we accelerate our shared mission of finding a cure and improving lives, making the greatest impact on the T1D community. These gifts can be made by a single donor, a family, a business, a foundation, or a group collectively donating the full amount at once.
What the Campaign Supports
Campaign gifts are needed to fuel our mission, accelerating initiatives such as:
A matching partnership with the federal government through the JDRF-CIHR Partnership to Defeat Diabetes, in which the Canadian Institutes of Health Research match 1:1 all donor investments in this partnership. This partnership supports 19 high-impact projects in stem cell cure research, mental health, and more, as well as a new nationwide screening research consortium in Canada.
When I think of how traumatic it was when doctors diagnosed my son, I can only imagine how much less scary and dangerous it would have been had he been screened for the autoantibodies of T1D first. And with companies developing drugs now that can delay and possibly prevent the disease, kids and adults with T1D autoantibodies can live more carefree years. Major gifts to the JDRF-CIHR partnership have the power to do this.
New Research Trainees and Clinical trials in Canada and worldwide. JDRF funding helps research that gets to the clinical trial stage. JDRF also helps to promote T1D trials across Canada, whether JDRF-funded or not. Clinical research is the best way to accelerate scientific discovery from the lab to patients. Many clinical trial scientific teams include new diabetes researchers bringing in novel, out-of-the-box ideas or belonging to startups leveraged by donor dollars.
Think of how the pandemic ignited the medical field and brought in new researchers to fast-track clinical trials for the COVID vaccine. Donating to JDRF’s Global Research pillar or T1D Fund accelerates worldwide innovation to bring T1D cures and treatments to people faster.
Canada’s first JDRF Centre of Excellenceat the University of British Columbia, which is laser-focused on cures. World-renowned BC researchers are collaborating in unique ways to speed up cure therapies. Donors who support the Centre with gifts of $25,000 and up are featured on a beautiful permanent donor wall at UBC.
I went to Vancouver last year to visit the Centre and was blown away by the breadth and pace of cure research. It gives me so much hope for Luke to have his diabetes cured in the future!
Access for All, JDRF Canada’s program that works with the T1D community to advocate provincial and federal government for better device coverage, treatment access, and research funding. Since the launch of the program, donors have helped our advocates improve diabetes device (advanced glucose monitors and insulin pumps) coverage in eight provinces and inspired federal research funding. Continued donor support will help to further remove inequities by lowering out-of-pocket diabetes costs, ensuring patient choice, and reducing or eliminating diabetes-related emergencies, thereby easing the strain on the healthcare system.
I live in Alberta with my family now, but I grew up in Cape Breton, Nova Scotia. Both provinces have their healthcare challenges. In Alberta, we are fortunate that JDRF advocates have lobbied for changes to insulin pump and advanced glucose monitor coverage, meaning my son’s tech will be covered until he is at least 18. But in Nova Scotia, no coverage exists for advanced glucose monitors, and people must pay out of pocket for these expensive devices or still use the less reliable finger-prick method.
JDRF’s Mental Health Strategy for T1D to fill critical gaps support. People with diabetes are more likely to experience mental health challenges such as depression, anxiety and eating disorders and can benefit from interventions that prevent or treat these mental health conditions. But standard care for diabetes doesn’t always address mental health concerns, despite evidence that mental health challenges affect the physical management of the disease. Donors to this strategy are directly addressing this vital and underserved need in Canadian healthcare by funding research studies testing different mental health interventions, supporting education initiatives, and investing in a bilingual Mental Health + Diabetes Training Program for Canadian mental health providers who can then apply to be listed in our national directory where people living with T1D can connect with a mental health provider in their area.
Beyond the overwhelming burden of self-care, diabetes can be life-threateningly stigmatizing. My son used to turn his glucose alarms off at school to avoid drawing attention to himself, which could have had dire consequences. The mental health impact of T1D is profound, and I am so glad Canadians are rallying behind this critical area of diabetes care.
We need supporters now more than ever to help us reach our $100M goal and get us closer to a world finally free from the monster known as type 1 diabetes. We cannot do it without you.
You can contact me at ryan@jdrf.ca or reach out to Nicole Robson, VP of Philanthropy at JDRF, at nicole@jdrf.ca to learn more about how you can support the $100M Campaign to Accelerate.
On behalf of my family and the JDRF family, thank you!
Warrior Hill was founded by a family with both a parent and child who live with type 1 diabetes (T1D) who have a passion for sports and a commitment to helping people with diabetes perform their best.
When Lisa and Aaron Hill’s (who lives with T1D himself) son Luke was also diagnosed with T1D, they knew they wanted him to keep playing sports, something so important to him.
Out of this they created Warrior Hill, a company that specializes in performance wear for athletes with diabetes. They believe that everyone should have the opportunity to perform at their best, regardless of their health conditions. They’ve designed a range of high-quality, safety-focused products that are specifically tailored to meet the unique needs of athletes with diabetes.
It’s their hope that the shirts can help make life a little easier for athletes with T1D, but most importantly with their determination to one day find cures for this disease. Warrior Hill is proud to partner with JDRF Canada to work together towards a world without type 1 diabetes.
JDRF was able to sit down with Lisa Hill to talk about their mission and what drove them to create their products for people with T1D.
JDRF: What made you choose JDRF as your charity of choice?
Lisa: Aaron was diagnosed with T1D first. Luke four years ago. We felt very supported by JDRF. We were at the diabetes clinic for a week at the hospital with Luke, and we received the Bag of Hope through the advisor, and got Rufus and he loved it. He was ten years old, (he’s 14 now) and he just loved the bear with the story book. I signed up for their peer support program Talk T1D, and had another parent call me, and they really helped me through some struggles. After this, as a family we started volunteering with JDRF, Aaron had a soccer program and donated through that. We started participating in a lot of events, we were the family showcased at the Vancouver gala, we’ve done the Walk.
So, when the business developed, we already had the relationship with JDRF developed organically, and we knew it was the perfect fit.
JDRF: Can you tell us a bit more about your personal family story?
Lisa: It was crushing for Aaron when Luke was diagnosed. Aaron was an adult when he was diagnosed (he was 38), and he shouldered much of his diagnosis and disease himself. But he knew how challenging a disease it is to live with, even if he handled his diagnosis with stoicism and toughness. So, when Luke was diagnosed, he was devastated, knowing how taxing T1D is – physically and mentally, emotionally. But he believes that he was diagnosed first to help Luke better prepare for life with diabetes.
We noticed the signs in Luke; the lethargy, throwing up after a high carb meal, the lack of energy – he went from being from a super active kid to this. We had a blood glucose monitor from Aaron, so we were able to test him both fasted and after eating a meal, and when the number was super high, we got him right to the hospital.
Because we knew what to look for, we caught Luke’s T1D very early, thankfully he didn’t have DKA (diabetes ketoacidosis), and didn’t have to stay in the hospital.
Of course, I was upset when Aaron when diagnosed, but you feel like he can handle it. He’s a tough guy, he can deal with it. But when it’s your child it’s a whole different feeling. And it was harder for us when Luke was diagnosed.
But for Aaron, he (and we) felt a lot more prepared to know how to manage Luke’s diabetes. It wasn’t new to us. If there is a silver lining to be found it’s that the positive of coming first is that Aaron can help Luke with the journey. Knowledge is power.
JDRF: Can you explain a little more how the Warrior Hill clothing works:
Lisa: A bit of history, my son Luke plays a lot of sports, he plays high level soccer and basketball, in addition to baseball, but we always found it hard with him, because if he removed his pump, he would get adrenaline highs, we’d be fighting the highs long after. Getting the highs low is harder than getting the lows up. He would feel like he had the flu, be lethargic, and of course, it affected his play.
We looked around, but we couldn’t find anything, so I made a shirt for him that could hold his pump when he wore his uniform.
Necessity is the mother of invention, and so I made the shirt for him. And the products we sell through Warrior Hill evolved after the last two years, of testing fabrics, tightness, pump locations. And what is there now – it’s a special pocket that’s lightly padded and is between the shoulder blades. It’s been proven to be one of the safest locations for an insulin pump while performing contact sports. You can wear your jersey over it and the pump stays on. Now Luke can compete at a higher level. It’s been a gamechanger. The basal that was lost during the game, made him so high and we couldn’t get it back for hours after. This shirt can be worn under a jersey, or team shirt, or even on its own.
I feel a lot of people with T1D are afraid of wearing their pump during activity, or just going into exercise with their pump –but there is so much research and study that shows you will perform better when you wear it.
And so really, Warrior Hill just started out of parents’ trying to find a solution for your child.
Sports was always one of my biggest anxieties. Knowing that he can wear his pump now helps so much and he just wouldn’t have the opportunities to play the sports that he does and at the level that he does without it. We never want him to miss out on the teams that he plays on – sports are a huge part of his life and helps him both physically and mentally.
It’s not fair for kids to be left out because of diabetes, so this a solution that can help them play too, and at the level they want.
JDRF: Is anything else you wanted to share with the T1D community who will be reading this?
Lisa: As a T1D parent, for us and our company Warrior Hill, I wanted to make sure also to touch on mental health. Just keeping your body moving, is so important for both physical and mental health. We don’t want anyone to miss out on what they love out of fear from diabetes. There are tools out there that you can use, meals, carb counting, educating yourself on what food to eat before exercise. Please – don’t let diabetes stop you. We want to support all people living with T1D with their goals, and to be athletes if they want to be athletes.
I’ve seen it with my son. He plays in soccer tournaments, basketball tournaments and he doesn’t miss out on anything because of diabetes. And that is our hope to offer all Canadians living with this disease. And we will support JDRF who work to make life easier for people with T1D now while helping to fund the research that gets us closer to a world free from type 1 diabetes.
To learn more about Warrior Hill and their athletic clothing for people with type 1 diabetes, please visit: warriorhill.ca
Despite best efforts to keep a child’s blood glucose within target, severe hypoglycemic episodes can happen, and it’s best to be prepared for the unpredictable. The risk of severe hypoglycemia is higher in children with T1D than in adults with T1D. This could be due to children being less aware of their symptoms and less likely to voice them out. During a hypoglycemic episode, if your child is not able to safely ingest any glucose tablets or fruit juice, someone will have to administer glucagon, a hormone that raises blood glucose levels. Prior to 2019, glucagon could only be administered by injection, but is now also available as a nasal spray for use in people aged 4 years and older. When prepared and administered as recommended, both products perform similarly. However, several studies have highlighted that glucagon isn’t always prepared or administered optimally in an emergency situation, so the treatment may not be as effective.
A recent study in Quebec, looked at the efficacy of nasal versus injectable glucagon by parents, guardians, and school personnel not familiar with administering glucagon. In this study, participants were asked to watch two short instructional videos on both types of glucagon. Three months later, they participated in a simulation in which they had to administer both types of glucagon in a stressful situation.
The study showed that nasal glucagon was not only faster and easier to administer, but its administration also had a better success rate than injectable glucagon.
Many mistakes were made when administering injectable glucagon, such as forgetting to remove the air from the syringe, injecting the diluent without mixing it with the glucagon powder first, or giving a full dose instead of the half-dose required for a child. Some participants even tried to administer insulin. Mistakes were less frequent with nasal glucagon (e.g., not pushing the plunger all the way in). Nasal glucagon appears to show many advantages over injectable glucagon, especially in school settings for children with T1D. However, it’s important to remember here that nasal glucagon is only approved for children aged 4 years and older, so injectable glucagon is the only treatment available for younger children.
The videos used for the study can be viewed, downloaded and shared using the following links:
Severe hypoglycemia
Severe hypoglycemia refers to a situation where blood glucose levels drop very low (often below 2.8 mmol/L) and where the person is unable to seek help or treatment on their own. In teenagers and adults, it refers to a situation where the person would not have been able to treat a low on their own. Symptoms can vary, but generally include shakiness, heavy sweating, confusion, irritability and, in some cases, loss of consciousness that may lead to seizures.
Severe hypoglycemia episodes are often described as a frightening, panic-inducing, alarming and dangerous episode that leaves people, especially loved ones, feeling helpless and unprepared. Each year, about 10% of people with T1D experience a severe hypoglycemic episode. Therefore, it’s important to keep an eye out for symptoms of hypoglycemia and to have a plan of action to be able to intervene quickly should blood glucose levels drop significantly.
Glucagon should be administered only in the event of severe hypoglycemia and if the person is unable to ingest any carbs by the mouth (e.g., inability to swallow, loss of consciousness). This emergency treatment releases glucose (sugar) stored in the liver into the bloodstream. Blood glucose levels should be back above 4.0 mmol/L within 5 to 20 minutes.
References :
Yue-Pei Wang et al., Comparison of Intranasal and Injectable Glucagon Administration among Pediatric Population Responders. Manuscript accepted in Diabetes Technology and Therapeutics.
Madar, Houssein et al. Influence of severe hypoglycemia definition wording on reported prevalence in adults and adolescents with type 1 diabetes: a cross-sectional analysis from the BETTER patient-engagement registry analysis. Acta diabetologica vol. 60,1 (2023): 93-100. https://link.springer.com/article/10.1007/s00592-022-01987-9
Brazeau, Anne-Sophie et al. Self-reported severe and nonsevere hypoglycemia in type 1 diabetes: population surveillance through the BETTER patient engagement registry: development and baseline characteristics. Canadian journal of diabetes vol. 46,8 (2022): 813-821. https://www.canadianjournalofdiabetes.com/article/S1499-2671(22)00134-4/fulltext
A significant part of JDRF Canada funding goes towards supporting cure-based research for type 1 diabetes (T1D). One such pathway is via stem cell replacement therapies that replace the beta cells responsible for producing insulin killed in the autoimmune process during T1D. The goal is to implant new beta cells that can one day start producing insulin again in a person with T1D, reducing or even eliminating the need for externally administered insulin, either via pump, pen or multiple daily injections. There are two primary sources of insulin producing cells: deceased donor pancreatic cells and human stem-cell derived islets.
In late June 2023, the U.S. Food and Drug Administration (FDA) approved CellTrans’s Lantidra™, the first cell therapy to be authorized in the United States, for use in adults unable to approach average blood glucose levels due to current, repeated episodes of severe low blood glucose (hypoglycemia).
This therapy takes deceased donor islets and places them into people with T1D suffering from repeated severe low blood-sugar, called hypoglycemia, events. This therapy, much like an organ transplant, requires the use of immunosuppression drugs. CellTrans has not provided details on commercial availability or insurance coverage at this time, but it has also currently only been approved for use in the United States.
In other related news, Eli Lilly and Company announced an agreement to acquire Sigilon Therapeutics, a public biopharmaceutical company with whom they had been partnering since 2018 to develop encapsulated islet cell therapies for T1D. These cell therapies include SIG-002, an encapsulated cell therapy that utilizes Afibromer™, a biomaterial designed to protect stem-cell derived insulin-producing cells from the immune system.
Per Lilly, the acquisition is the culmination of years of partnership to develop SIG-002, with Rogerio Vivaldi, M.D., CEO of Sigilon, noting that “Lilly is well-positioned to apply its industry-leading clinical and technical capabilities to harness the full potential of SIG-002 for the benefit of patients and their caregivers.”
Alongside the JDRF T1D Fund, Eli Lilly is also invested in Seraxis, a venture-backed start-up company developing islet replacement cell therapies for T1D.
How can this help people living with T1D?
The development of islet cell therapies is paramount to JDRF’s strategy to develop cures for T1D, and this news speaks to a long history of JDRF support for the academic researchers behind these therapies.
Lantidra, which was developed by CellTrans, is led by José Oberholzer, M.D. He is a JDRFI grantee and a member of the JDRF Cell Replacement Consortium. JDRF has awarded Dr. Oberholzer significant funding since 2006 for his work on stem cell-derived replacement therapies. JDRFI also awarded Daniel Anderson, Ph.D., and Robert Langer, Sc.D., more than $20 million in funding since 2004 to help support the development of Afibromer, the material used in SIG-002.
Lilly’s acquisition of Sigilon is a signal of interest by one of the world’s leading pharmaceutical companies in the development of islet cell therapies—another leading pharmaceutical company working on cures for T1D. This also includes the stem cell-derived islet replacement activities of both Novo Nordisk’s partnership with Aspect Biosystems and Vertex’s positive update at ADA, as well as on the immunology side, Sanofi’s acquisition of Provention Bio.
The FDA’s approval of Lantidra and Lilly’s agreement to acquire Sigilon represent two steps forward in the path to cures.
JDRF Canada is currently pursuing multiple therapeutic approaches to cure T1D, and the T1D Fund has made 37 investments in venture backed companies with T1D programs since its launch in 2016, with over 20 active cures programs in development. With the T1D Fund, JDRF will continue to support and pursue these options to help bring these life-changing therapies to more people faster.
Zucara Therapeutics Inc., today announced additional funding from JDRF International in support of the development of ZT-01, a once-daily therapeutic designed to minimize hypoglycemic episodes in people with type 1 diabetes (T1D). JDRF will support Zucara’s planned Phase 2a study of the effect of ZT-01 On Nocturnal hypoglycemia Events in people with T1D (“ZONE”). Zucara expects to begin clinical trials in Fall 2023.
ZT-01 has now been approved by both Health Canada and the FDA for the Phase 2 clinical trial.Once the trial sites have been confirmed, JDRF will provide information on how to participate on our clinical trials page found here: https://jdrf.ca/participate-in-research/
Why this news is important:
Having demonstrated proof-of-concept and ZT-01’s ability to significantly increase glucagon release in patients with T1D, the Phase 2 ‘ZONE’ trial will evaluate if ZT-01 can prevent potentially dangerous low blood glucose levels overnight.
The multi-centre trial is slated to begin in Q3 2023, with the incidence of nocturnal hypoglycemic events compared to placebo serving as the primary endpoint.
ZT-01 has the potential to become the first drug available to prevent hypoglycemia in people with T1D.
Low blood glucose, called hypoglycemia, is a real fear for people with type 1 diabetes (T1D). Although there are rescue treatments for it, such as injectable or nasal glucagon (Baqsimi), there are currently no preventive therapies available. Canadian company Zucara Therapeutics, however, may have an answer. It is developing a once-daily therapy, called ZT-01, that restores a person with T1D’s glucagon response so that they can counter-regulate hypoglycemia.
April 19, 2023 – Update
Zucara Therapeutics announced that it received clearance from the United States’ Food and Drug Administration (FDA) for the Company’s planned Phase 2 ‘ZONE’ clinical trial of ZT-01 for the prevention of night-time hypoglycemia in patients with type 1 diabetes (T1D).
Update: September 19, 2022
On September 19, 2022, Zucara Therapeutics reported that the highly positive results from its proof-of-concept Phase 1b trial of ZT-01 has secured continued funding for Phase 2 clinical studies. Please see this link for more information. This is a once-daily therapeutic drug that restores glucagon secretion to prevent hypoglycemia, and if approved would be the first drug of its kind for people with type 1 diabetes.
What this means:
Zucara has achieved the development milestones required to secure the remaining funds available from its previously announced US$21 million Series A Financing.
Zucara plans to file an investigational new drug (“IND”) application for a Phase 2 trial by year end, with initiation of first patient dosing expected in Q1 2023.
ZT-01 has the potential to become the first therapeutic designed to prevent hypoglycemia in people with type 1 diabetes.
This is a very exciting development and has the potential to change the realities for people with T1D, particularly those who are hypoglycemic unaware. JDRF will continue to monitor trial results and will update as more become available.
***
Update: February 17, 2022 On February 8, 2022 Zucara Therapeutics Inc., a diabetes life sciences company announced that the peer-reviewed journal, Diabetes, Obesity and Metabolism, published a paper reporting positive preclinical data on its diabetes drug ZT-01, which is currently in a Phase 1b clinical trial for the treatment of insulin-induced hypoglycemia in patients with Type 1 diabetes (T1D).
“We are thrilled with the positive results of this preclinical study, whose efficacy portion employed a similar methodology to that of our ongoing Phase 1b clinical trial,” said Richard Liggins, Zucara Therapeutics’ Chief Scientific Officer. “This study demonstrated that ZT-01 significantly increased glucagon secretion in rats with T1D, and reduced the frequency and severity of hypoglycemia, suggesting ZT-01’s potential to reduce hypoglycemia exposure in humans with T1D.”
If approved, this would be the first once daily therapeutic for people with T1D to help reduce the effects of hypoglycemia, one of the most common complications of the disease.
JDRF will provide updates as the trial progresses and further results are known.
***
Previously, JDRF provided funding to move Zucara beyond the “valley of death”—when discovery research is translated into a therapy or technology, but lacks the funding to make it real. In April 2020, Zucara secured the backing of a large venture capital fund to move ZT-01 into clinical trials.
Hypoglycemia is an unintended consequence of insulin therapy, and happens when one takes too much insulin. It causes sweating, fatigue, irritability and, in severe cases, seizures and/or death. It is one of the most feared and acute complications of T1D.
The first clinical trials of ZT-01 began in September, 2020 in Ontario. If these early trials are successful, ZT-01 will be much closer to approval, and to providing much-needed relief to the millions of people with T1D and their families who suffer from the fear and dangers of hypoglycemia.
In November 2020, Zucara also announced new funding to broaden development of ZT-01 for hypoglycemia in people with insulin-requiring type 2 diabetes, indicating that even more people stand to benefit from the new drug.
In late April 2023, Helena Gottschling was elected Board Chair for JDRF Canada.
Helena Gottschling is a purpose-driven leader who enjoyed a 37-year career with RBC before retiring in 2022. As Chief Human Resources Officer (CHRO) from 2017-2022, Helena was a member of Group Executive who set the overall strategic direction of RBC, Canada’s biggest bank and one of the largest in the world based on market capitalization. Helena was named one of Canada’s Most Powerful Women in 2021 by the Women’s Executive Network in the C-Suite Executives award category.
Her distinguished career encompassed senior roles in Retail Banking, Human Resources and National Office, and she has expertise in talent strategy, performance enablement, leadership development, cultural change and enterprise transformation.
Helena built her reputation as a trusted advisor, a change champion, and a devoted employee advocate by unlocking the potential of employees and strengthening RBC’s position as a top employer of choice on a global scale. She has been responsible for many transformational initiatives impacting 86,000+ employees, including the future of work strategy, COVID-19 response, diversity & inclusion strategy, and reimagining the HR function.
She is also a board member of Plan International Canada.
Helena is married with one son and lives in Kelowna, British Columbia, Canada. Her son lives with type 1 diabetes (T1D).
Helena recently sat down with JDRF Canada to talk about what brought her to the organization and what she hopes to achieve as Board Chair.
JDRF – Tell us a bit about your personal story about your son’s diagnosis.
We moved to Calgary from Vancouver in late spring 2002. At the time, Matt was 9 years old, and we were all adjusting to our new life in Alberta. We were enjoying our first winter skiing most weekends in the beautiful Rocky Mountains.
Matt received excellent care at the Children’s Hospital in Calgary and again in Toronto when we moved there in 2004. Our son never lets diabetes get in the way of his life! He skied, played rep soccer, then rugby at school and university.
And when he was able to access an insulin pump and continuous glucose monitor (CGM) it helped him better manage his diabetes and of course gave him more flexibility and independence. Which is why JDRF advocates and supports patient choice and universal access to these lifesaving devices.
JDRF – What progress have you seen during your time as a board member?
When Matt was first diagnosed 20 years ago, I got involved with JDRF through the ‘Ride for a Cure’. It was in Calgary, and I still remember the first year. I think there were two stationary bikes going! It’s incredible how much the event has grown since then and how things have changed!
At that time, we managed his T1D through injections with fast acting and long-acting insulin – testing his blood glucose levels multiple times a day, recording it manually in his workbook and calculating the amount of insulin he would need based on his food intake and exercise.
Since then – and just within the last twenty years – the progress made to help people with T1D manage their diabetes more effectively has been amazing. First with the pump – which helped him stay in range while offering more ‘just in time’ mgmt.
Then came the CGM – as a parent, the CGM gave me some peace of mind. Especially when our son left home to go to university and then live on his own. Knowing that an ‘alarm’ would alert him when he was too low or high (blood glucose levels) so that he could make adjustments (either with more insulin or eating something with sugar), helped me sleep at night.
And the progress made towards finding a cure is so encouraging – research projects from stem cell research to islet transplantations in countries around the world gives me so much hope as a parent with a son with T1D, and as someone involved with JDRF who is helping us get there.
JDRF – what do you hope to see/achieve as Board Chair?
My ultimate hope of course is that a cure is found for T1D – a world without type 1 diabetes! Until that time, I want to help ensure that JDRF Canada continues to fund research projects towards this goal and continue our advocacy work for those living with T1D through Access for All – ensuring equitable access to insulin, diabetes devices, the Disability Tax Credit and government funding for more research.
Our immediate goal is to complete our $100M Campaign to Accelerate fundraising campaign in celebration of the 100-year anniversary of the discovery of insulin – to date, we’ve raised over $70 million of our goal of $100 million. The support we’ve received has been absolutely inspiring.
We need to continue to communicate the impact we’ve made to our donors and supporters – dollars to research and most importantly, the outcomes of the research projects we fund. We will also continue to improve our funds to mission, making sure that the funds we raise go to the most promising research both into cures, which accounts for approximately 70% of funding disbursement, and into improving lives for people with T1D today, including our increased focus on mental health.
We also must continue to collaborate with partners along the way – the JDRF affiliates but particularly JDRFI in the United States, all levels of government, academia and other charitable orgs like Diabetes Canada and Brain Canada who support a shared mission and vision.
We need to continue to evolve our culture at JDRF so that employees, volunteers and supporters experience and feel the impact we’re making, because they all contribute through their work each and every day.
And as Chair of the Board, to work with the Senior Leadership team and Board Directors to ensure we deliver on our strategy, our mission, and our promise as an organization to our donors, supporters, staff and all Canadians affected by T1D, as we work towards a world free from type 1 diabetes.
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.
