In March 2026, Jaipur, India, hosted something unprecedented: the first global gathering dedicated to ending diabetes stigma and beginning to build solutions.
The inaugural Global Summit to End Diabetes Stigma welcomed 190 participants from 35 countries. More than half were living with diabetes themselves. They came not simply to describe the problem, but to chart a path toward meaningful, lasting change.
The Summit was built around a simple but powerful principle: #NothingAboutUsWithoutUs.
That’s not a slogan. It shaped every aspect of the event.
The 16-member Steering Committee represented 10 countries, with 11 members bringing lived experience of diabetes. On the Summit’s opening day, participants calculated that the room represented more than 1,300 cumulative years of lived and loved experience with diabetes—a powerful reminder that the people most affected by diabetes stigma are also best equipped to help solve it.
Ensuring diverse voices were present was equally important. Eighty-five delegates attended through full #dedoc° travel scholarships made possible by Breakthrough T1D and several industry sponsors. Nearly nine in ten scholarship recipients had lived experience of diabetes, and more than 60% came from low- and middle-income countries. For many, it was their first international conference. For some, it was their first time traveling internationally.
Guiding conversations throughout the event was Renza Scibilia, Breakthrough T1D’s Senior Director for Global Responsibility and one of the Summit’s emcees. A longtime advocate for the Language Matters movement, she helped facilitate discussions rooted in both lived expertise and real life with T1D.
“We weren’t talking about people with diabetes—we were talking as people with diabetes.”
-Renza Scibilia
Across two days, participants gave voice to the many ways diabetes stigma shows up in everyday life. They spoke about being blamed for a diagnosis they did not cause. About language that diminishes rather than empowers. About navigating healthcare systems, workplaces, schools, and communities where a medical condition is too often misunderstood as a personal failing.
These experiences are far from isolated. According to research published in The Lancet, four in five people living with diabetes report experiencing stigma, and one in three report discrimination.
What made this Summit different was what happened next. The Summit began with stories. It ended with evidence, commitments, and a shared commitment to creating a roadmap for action.
Together, participants explored opportunities to improve language, strengthen healthcare, influence public awareness campaigns, advance policy, and elevate diabetes stigma within international human rights frameworks.
The Summit concluded with an agreement to turn ideas into commitments, reinforcing that meaningful progress depends not only on conversation, but on sustained action.
The Global Summit represented the next step: from commitment to coordinated action.
No single meeting can end diabetes stigma.
But the Global Summit marked an important turning point.
A global roadmap for action is now being co-designed, informed by the evidence shared in Jaipur and the commitments participants made together. The work will continue across countries, organizations, and communities, building on the momentum created by this first gathering.
For Breakthrough T1D, the Summit reinforced a belief that guides our work around the world: the most meaningful progress on access, equity, and care happens when people with lived experience are not simply represented—they are trusted to lead.
The conversations in Jaipur have ended.
The movement they strengthened is only beginning.
For more information, including key outcomes and ongoing initiatives, visit the End Diabetes Stigma website.
For more information about Breakthrough T1D’s global initiatives, visit Our Global Presence and ALIGN-T1D.
Islet cell therapies for type 1 diabetes (T1D) replace destroyed insulin-producing beta cells with functional cells that allow the body to make insulin again. To ensure there are enough islet cells for everyone with T1D who wants them, Breakthrough T1D is prioritizing manufactured cell therapies, which can be made in large quantities in a laboratory, adhering to high levels of quality control.
These therapies are quickly advancing through the drug development pipeline. How are we making sure the clinical community is prepared for their arrival?
The answer: Centers of Reference.
Centers of Reference are expert multidisciplinary T1D care centers that are preparing healthcare professionals (HCPs) around the world to administer manufactured islet cell therapies to people with T1D. The goal is to make sure that expert clinical teams—who are already doing islet cell transplants at low scale—are ready to integrate these therapies into clinical practice at their institutions and train others, once they have regulatory approval.
The second annual Centers of Reference meeting was held at Breakthrough T1D HQ in early May by our Medical Affairs team. Read on to learn more about the attendees, what the meeting covered, and what we can expect next year.
This meeting was hosted by Thomas Danne, M.D., Ph.D., Chief Medical Officer International, Brynn Marks, M.D., Senior Director of Medical Affairs, Alessandro Bisio, M.D., International Director of Medical Affairs, and Amara Ogbonnaya-Whittlesey, M.D., U.S. Director of Medical Affairs, who brought together the best and brightest minds who can make Centers of Reference a reality.
Physicians, transplant surgeons, nurses, scientists, and other HCPs from various global medical institutions were in attendance, coming from:
Additional attendees from Breakthrough T1D included CEO Aaron Kowalski, Ph.D., Senior Vice President of Research Esther Latres, Ph.D., multiple members of our Medical Affairs and Advocacy teams, and two members of our Participant Advisory Council who are living with T1D.
What has changed since last year’s meeting?
The objective of this meeting was to build on the progress that the working groups have made over the past year. Each group focuses on a key aspect of the development of Centers of Reference, taking a divide-and-conquer approach to capitalize on experts’ strengths and workshop ideas with the larger team.
We have learned recently that when a first-of-its-kind therapy comes to market, it isn’t magically going to be adopted by physicians and administered to people. There is a significant amount of prep work that has to happen to ensure that every connection is made so that these therapies, and ultimately people with T1D, succeed.
This meeting is that work, led by the leaders in the field.
The group identified which topics around islet cell therapies should be included in educational programs for aspiring T1D medical professionals, including eligibility for islet cell therapies, the transplant procedure itself, post-transplant care, and long-term monitoring. Importantly, the ultimate career path of the trainee should play a factor in which topics require further education versus a brief overview. For example, a psychologist working with the T1D community may not have the same educational needs as a transplant surgeon, but both should understand T1D cell therapy basics.
This group focused on how to best educate HCPs and people with T1D about emerging islet cell therapies. The team found that most people who receive cell therapies self-refer, but misconceptions are a major barrier to pursuing them. Priority areas for increasing awareness in the T1D community are communicating through social media, creating an easy-to-use landing page or website with information and opportunities to connect with medical teams, and connecting people with peers who have received islet cell transplants. In terms of HCPs, the group is focused on creating referral pathways, using artificial intelligence to help establish clinical workflows for islet cell transplants, and utilizing professional organizations to connect with and educate the T1D medical community.
This group has one of the most challenging tasks: creating a roadmap for the clinical implementation of islet cell therapies. This includes determining eligibility based on defined clinical measures, reaching consensus on the best way to approach care before, during, and immediately after islet cell therapy, and consistent long-term monitoring. To add to the challenge, this roadmap must be applied across diverse clinical settings in different countries. The experts in the room—some of the most prominent T1D physicians and transplant surgeons in the world—made significant progress in defining clinical measures and tools that should be used in islet cell transplants.
Centers of Reference will be held to the highest standards to ensure they are providing top-quality clinical care to people receiving islet cell transplants. To make this possible, this group created a framework for assessing Center readiness, collaborating with registries for data-sharing, and benchmarking to evaluate Center effectiveness. This includes development of specific criteria laying out what each Center needs, such as a complete islet cell therapy care team, established processes for quality and safety, research teams, and more.
One theme was clear throughout nearly all of the working groups: incorporating the perspectives of people with T1D is absolutely critical. The groups agreed that clinical decision-making around islet cell therapies is about more than just someone’s blood sugar—the way a person feels, their level of diabetes distress, and their individual circumstances are key factors to integrate into shared decisions between people and their care teams.
Over the next 12 months, each team will follow up on the challenges, solutions, and immediate next steps identified during the meeting to keep progress moving. Thanks to everyone’s hard work over a productive and exciting two days, we are accelerating faster than ever toward the development of expert Centers of Reference.
“Cell therapies are getting closer and closer to reality, and our partners in the clinic must be ready to implement them. This is a good problem to have! We know that new therapies will take far too long to reach the people that need them if we don’t have an established clinical infrastructure. We have the best people in the world in the room, working through the problem with us, to ensure that when these therapies do become an approved therapy option, the T1D community can benefit as soon as possible.”
-Thomas Danne, M.D., Ph.D., Chief Medical Officer International at Breakthrough T1D
“Our hope is that Centers of Reference enable preparedness and expedite the delivery of new cell therapies—as they are approved—to become immediately accessible to people with T1D most in need of a novel intervention for the treatment of their diabetes.”
-Michael Rickels, M.D., M.S., Medical Director, Pancreatic Islet Cell Transplant Program, Hospital of the University of Pennsylvania
“Breakthrough T1D is proactively working now to identify and remove current and future barriers to T1D cell therapy coverage. By working with payers and policymakers now, we will accelerate broader access to T1D cell therapies.”
-Aaron Turner-Phifer, Senior Director of Health Policy at Breakthrough T1D
“Centers of Reference can help prepare healthcare systems around the globe for future cell therapies in T1D by building the expertise and standards needed to deliver them safely. They also help share experiences and best practices so more hospitals are ready to adopt these treatments over time.”
-Carmen Hurtado del Pozo, Ph.D., Director of European Research at Breakthrough T1D
Manufactured islet cell therapies are coming. It is not a matter of if, but when. We are at a critical moment and need to ensure that HCPs are ready. Teamwork will get these therapies into clinics so people with T1D don’t have to wait years to get them.
This is why Breakthrough T1D is acting now: when the first manufactured islet cell therapy becomes commercially available, multidisciplinary care teams around the world will be prepared. This is essential to our Project ACT initiative, which is accelerating islet cell therapies that do not require immunosuppression for the T1D community.
Our goal is to advance islet cell transplants and establish Centers of Reference around the world, so that people anywhere can access these therapies as they become available. Centers of Reference are leading the way for safe and effective integration of manufactured cell therapies into clinics. These annual meetings provide a platform for international experts to connect and refine these Centers over two days of idea-sharing and collaboration. We’re already looking forward to seeing what the team will have accomplished by this time next year!
Today, Breakthrough T1D co-hosted an event with leading international diabetes organizations to discuss cardiovascular disease (CVD) and type 1 diabetes (T1D)—where we are, challenges that remain, and how we can work together in Europe and beyond to address this need for the T1D community.
This event, titled “Type 1 Diabetes & Cardiovascular Disease: From Data to Solutions,” took place today on November 14, 2025, in Brussels, Belgium. Breakthrough T1D co-hosted this event in conjunction with the International Diabetes Federation (IDF) Europe and the International Society for Pediatric and Adolescent Diabetes (ISPAD). The goal was to bring together different stakeholders to address a critical concern: the lack of therapies for cardiovascular disease for people living with T1D.
The speakers at the event covered a range of topics. Jonathan Rosen, Ph.D., Director of Research at Breakthrough T1D spoke about the often-overlooked link between CVD and T1D. Others touched upon lessons we can learn from (T2D) diabetes and CVD, the gaps in evidence that still exist, new frontiers in CVD care for people living with autoimmune diseases, and the inclusion of T1D in CVD therapy development.
From Breakthrough T1D:
Other attendees:
People living with T1D have a high risk of developing heart complications, despite advances in T1D care. At this time, there are only a few options available to lower this risk. In the United States and Europe, people with T1D have access to blood pressure medications and lipid-lowering medications (for example, statins) that can reduce the risk of developing CVD.
Other therapies, like the SLGT inhibitors empagliflozin or dapagliflozin, are the standard of care in the U.S. to treat heart failure in people without diabetes or with T2D. This class of drugs has revolutionized treatment and significantly reduced the rates of heart failure in these populations. However, people with T1D were excluded from these clinical trials—despite the fact that heart disease remains a critical concern for the T1D community. While not strictly approved, these drugs are occasionally prescribed off-label to reduce the risk of heart failure in people with T1D. Greater accessibility will require regulatory approval, and these options are not currently available for people living in Europe.
Despite the availability of some treatments that can reduce the risk of heart complications, there are no available cardioprotective therapies in the U.S. or Europe that can prevent CVD in people with T1D. More targeted, innovative therapies and treatment strategies are needed to further reduce the risk of—or ideally prevent altogether—cardiovascular complications in the T1D population.
There is a clear unmet need for the T1D community: the risk of CVD is high, and there are not enough options to treat or prevent it. That’s where events like these come in. They are a call to action for collaborative research efforts, better data integration, new and innovative ideas, and global cooperation towards a shared goal of better heart health for people living with T1D. The growing prioritization of CVD is evidenced by the European Commission’s cardiovascular health plan—which includes the Joint Action on Cardiovascular Diseases and Diabetes—showcasing how stakeholders in Europe are taking charge to accelerate breakthroughs for CVD and T1D.
“Cardiovascular disease remains the leading cause of death for people with type 1 diabetes, yet targeted therapies and guidelines are still lacking. In collaboration with IDF Europe, ISPAD, and aligned with the European Commission’s cardiovascular plan, this event brings together researchers, clinicians, patient advocates, regulators, and industry partners to drive collaborative solutions and accelerate progress toward better prevention and treatment strategies.”
Addressing the challenge of cardiovascular complications is a cornerstone of our Improving Lives strategy. Breakthrough T1D is actively supporting clinical trials for therapies that can reduce or prevent CVD in people with T1D, and we are working on identifying new projects and researchers to fund to further accelerate these efforts.
We are committed—on a global scale—to making sure people with T1D live the best lives possible, which includes having accessible therapies that reduce the risk of heart complications. Events like these bring together the right people that can make this happen in Europe and beyond.
Breakthrough T1D, in partnership with Friends of Mewar and UNICEF, participated in the Udaipur Type 1 Diabetes Summit: Advancing Access, Equity, and Action, in Udaipur, Rajasthan, India. The event gathered government leaders, health experts, community advocates, and international partners to develop a collaborative roadmap for strengthening type 1 diabetes (T1D) care across India.
Hosted by Friends of Mewar’s Founder and Breakthrough T1D Global Ambassador Princess Padmaja Kumari Parmar, who has lived with T1D for more than 40 years, the two-day summit was a critical milestone in building partnerships that drive sustainable, system-wide improvements in T1D care and equity.
“Timely healthcare access and accurate information are vital for managing type 1 diabetes and other non-communicable diseases,” said Princess Padmaja. “Collaboration is key to breaking down barriers and stigma, and ensuring that children and youth receive the support they deserve.”
Topics discussed included integrating T1D into national health frameworks, scaling digital and rural care solutions, promoting equity and stigma reduction, and aligning regional action across Southeast Asia. The summit also featured updates on the T1D Basic Care Pilot Program, a partnership between Breakthrough T1D and the William J. Clinton Foundation, showcasing early successes in improving insulin and glucose monitoring availability in public health settings.
The Udaipur Type 1 Diabetes Summit concluded Princess Padmaja’s strong call for sustained innovation, investment, and partnership to address the urgent need for support for youth living with T1D in India and around the world.
The summit aligned with Breakthrough T1D’s mission of advancing cures while improving lives. Affordable insulin, access to T1D technology, early diagnosis to prevent complications at diagnosis, and psychosocial support are all critical to improved health outcomes on the path to cures.
“In India and many other countries, children and young people face significant barriers to care,” said Lynn Starr, Chief Global Advocacy Officer at Breakthrough T1D. “Our commitment is that when cures arrive, they are accessible to everyone, everywhere, regardless of geography or income.”
Born in Udaipur, Rajasthan, India, Princess Padmaja was diagnosed with T1D at age 5. At the time of her diagnosis, tools and insulin options for managing T1D were limited—checking blood glucose levels or dosing insulin based on carbohydrate quantities wasn’t even possible.
“Witnessing the progression of T1D breakthroughs over the years has been nothing short of remarkable,” said Princess Padmaja. “When I first started insulin injections, it was a cumbersome routine, requiring multiple injections a day. Today, thanks to advancements in insulin pump technology, managing T1D has become more streamlined and efficient, improving my quality of life.”
As a Breakthrough T1D Global Ambassador, Princess Padmaja is working to combat the stigma of T1D and address the challenges surrounding the condition. She hopes to inspire changes within the government’s policies that could support people with T1D and within India’s healthcare system.
“As a Global Ambassador, my aspirations do extend beyond borders,” she said. “The challenges surrounding T1D are not exclusive to India; they are present globally.”
“By rallying support and implementing these measures, I can help tackle these challenges, ultimately improving the quality of life for those with T1D.”
We’ve made major progress in the development of cell replacement therapies for type 1 diabetes (T1D) over the past few decades. We know that manufactured islets can be safely implanted into people and produce insulin. Yet, there is more work to do to advance cell therapy research and bring these therapies to the larger T1D community. Breakthrough T1D’s Project ACT (Accelerate Cell Therapies) will make manufactured cell replacement therapies that do not require broad immunosuppression a reality, faster.
To accelerate islet replacement therapies faster than ever, Breakthrough T1D launched Project ACT (Accelerate Cell Therapies) to simultaneously advance research, development, regulatory policies, access, and adoption of manufactured islet therapies that do not require broad immunosuppression.
To drive innovation in manufactured islet therapies, Breakthrough T1D, Breakthrough T1D Canada, and the Stem Cell Network (SCN) have partnered to support four new projects led by Canadian researchers. The organizations issued a joint Request for Applications and together will maximize resources to drive high-impact research into manufactured cells. This partnership is a novel and meaningful part of Breakthrough T1D’s global Project ACT effort to power high-impact cell therapies research.
“Accelerating cell therapies is a central focus of Breakthrough T1D’s research strategy to drive toward cures for type 1 diabetes,” said Breakthrough T1D Vice President of Research Esther Latres, Ph.D. “We’re excited to join Stem Cell Network and Breakthrough T1D Canada in funding these outstanding cell therapy researchers and projects that can build on the current momentum to overcome barriers and advance cell therapies that can benefit all those who live with type 1 diabetes.”
These projects will receive support from May 2025 to April 2027. They are a part of a broader SCN investment totaling more than $33 million to support 36 regenerative medicine research projects and clinical trials.
Read on to learn more about the exciting, newly funded projects.
Fueling Biotechnology Partnerships Award
Current cell therapies for T1D, while often effective, are hampered by reliance upon donor-derived cells and poor cell survival after transplant, necessitating large doses of cells and repeat procedures. This ambitious new project will address both the source of islet cells and the low cell survival rates associated with islet transplantation by accelerating Lunar Therapeutics’ preclinical development of a manufactured islet replacement product. Takebe’s lab describes it as “complex miniature organs” for T1D.
This product will consist not only of insulin-producing cells, but also endothelial cells, which line blood vessels. Endothelial cells will support islet cell survival and engraftment upon transplantation.
Organoid
An organoid is a three-dimensional tissue grown in the lab that resembles an organ.
To accomplish this objective, Lunar Therapeutics will bring together Canadian expertise in manufactured islets and clinical islet transplantation led by Drs. Timothy Kieffer and James Shapiro. The team will also include U.S.-based Dr. Takanori Takebe, who specializes in designing complex organoids composed of various cell types. Using technologies developed across each laboratory, this multidisciplinary team will work to address challenges in islet cell transplantation.
Impact Award
The implantation of manufactured islets into people with T1D can restore insulin production, eliminating the for external insulin and improving quality of life. However, after islet cells are derived from donors or manufactured in the lab, they must be stored before being used to treat a person with T1D. Currently, the storage and transportation of islet cells is difficult, and the only storage method is freezing at low temperatures in the presence of chemical solutions that help with the freezing process. However, these solutions cause cell death during thawing and may also cause allergic reactions in people after transplantation.
This project will address this gap in the field by aiming to develop non-toxic, naturally derived gels to optimize islet freezing and storage. The gel-based products will be evaluated for large-scale commercial production. The success of this project will provide new intellectual property that will be of interest to researchers and companies in regenerative medicine in Canada and across the globe.
Impact Award
Manufactured islets offer a potentially unlimited source of islets for transplantation. Since manufactured islets carry unique risks compared to donor-derived islets, containment within a device could allow retrieval if off-target growth ever occurs. However, encapsulation devices that have been tested in clinical trials so far and have shown minimal success, mainly because blood supply to the cells is limited by the device barrier. In this project, the team proposes to develop a device where the manufactured islets are placed around pre-established vessels that can improve islet cell survival and speed of insulin responses via improved blood supply. In this project, they will optimize their device design and conduct advanced preclinical studies.
This project could lead to better survival and function of manufactured islets, so they can keep producing insulin. The project may also pave the way for other engineered human-scale encapsulation devices, also sometimes called bioartificial organs.
Impact Award
There are many new treatments on the horizon for T1D, including those that block autoimmunity or replace insulin-producing cells. However, a major barrier to these therapies is the lack of an easy-to-use model in which their effects on human cells can be tested before advancing to human trials. The standard preclinical model is to test therapies in small animal models of T1D, but this has significant limitations since it is nearly impossible to replicate the human immune system. In fact, diabetes has been “cured” hundreds of times in a mouse model, which has not translated to humans.
To overcome this barrier, Dr. Levings and her team will establish a new a model that recreates human T1D autoimmunity in the lab. The model will use manufactured cells to create the three types of cells that are involved in the disease: insulin-producing cells and two different types of immune cells. Using the model, cells can then be combined in different ways to recreate what usually happens during autoimmunity.
A model of human T1D that can be generated in the lab will help test potential treatments and prompt new questions about why T1D develops, and how to prevent it. Thus, this research has the potential to support the further development of innovative therapies that may offer new approaches to prevent or treat people with T1D.
Curing T1D is the north star of Breakthrough T1D. These partnerships will help us work together toward our shared goal of a world without T1D—through innovation, forward-thinking cell therapy research, and the best and brightest scientists.
This past week, Breakthrough T1D helped organize an event hosted by Member of European Parliament Tomislav Sokol, Ph.D., titled “Accelerating Breakthroughs to Address Unmet Needs in Type 1 Diabetes.” This meeting, a significant coming-together of Breakthrough T1D and European policymakers, focused on the role of the EU in addressing the needs of the T1D community and accelerating T1D breakthroughs.
The purpose of this meeting was to raise awareness of T1D and the urgent need for the accelerated development and approval of breakthrough therapies in the EU. Conversations between Breakthrough T1D and European policymakers homed in on barriers and opportunities to advancing cures—including cell therapies and disease-modifying therapies—in the EU to get them into the hands of people with T1D, faster. This was an important step in establishing an open dialogue between Breakthrough T1D and the EU Institutions about working together to address T1D globally.
“This event in the EU Parliament allows us to engage with important decision-makers to ensure that the research and policy environments are oriented in a way to accelerate development of T1D breakthrough therapies in the EU as we also do in other countries,” explained Campbell Hutton, Senior Vice President of Global Advocacy at Breakthrough T1D.
Several Breakthrough T1D leadership and staff members attended the meeting, including Thomas Danne, M.D., Ph.D., Chief Medical Officer, Global; Sanjoy Dutta, Ph.D., Chief Scientific Officer; Lynn Starr, Chief Global Advocacy Officer, Carmen Hurtado del Pozo, Director, European Research; and Campbell Hutton, Senior Vice President of Global Advocacy.
Several Members of the European Parliament (MEP) in addition to host Tomislav Sokol, Ph.D., were in attendance. Other attendees included people with a lived experience of T1D, health staff from EU Member States, researchers in the EU, and other European diabetes organizations.
Dr. Dutta delivered a talk on the role of breakthrough therapies in transforming T1D. Dr. Danne moderated a panel to provide insight about unlocking the potential of cell therapies breakthroughs in the EU with T1D cell therapy researchers: Professor Lorenzo Piemonti, M.D., Director of the Diabetes Research Institute at Vita-Salute San Raffaele University and Associate Professor Francoise Carlotti, Ph.D., Head of the Islet Research Lab at Leiden University Medical Center. Finally, Lynn Starr closed with remarks about our shared global responsibility to work toward breakthrough T1D therapies.
The event took place on June 5, 2025, in Brussels, Belgium, at the European Parliament.
T1D is on the rise around the world, including in Europe. Recent publications by Breakthrough T1D staff and leadership brought attention to the rise in incidence and global T1D burden. We need to act now in conjunction with governments around the world—like the EU—to address the unmet needs of everyone around the world affected by T1D.
T1D cures, including cell therapies, are advancing through the clinical pipeline. Bringing awareness of T1D to the forefront—and educating key people on the progress we’re making toward cures—will be incredibly important for driving T1D research forward in the EU. This represents a critical opportunity for the EU to accelerate cell therapies faster than ever. As a global organization, Breakthrough T1D is collaborating with the EU government to help make this possible.
As the largest global funder of T1D research, Breakthrough T1D has provided funding to researchers across the world in addition to the EU. Right now, Breakthrough T1D is supporting €56 million in European initiatives, including 31 clinical trials—representing 19% of our funded research (including the U.K.). Breakthrough T1D has expert teams in research, medical, regulatory, and advocacy in Europe, meaning we are uniquely positioned to provide guidance on how the EU can strengthen its T1D efforts and collaborate on a global scale to drive T1D breakthroughs, especially in cell therapies.
Type 1 diabetes is a critical disease in Europe, and I was pleased to host an event for the T1D community and my colleagues in the European Parliament to learn about the unmet needs in T1D and how we can work together to accelerate breakthrough therapies in Europe to address those needs.”
“This meeting is critically important to bringing the unmet needs of the T1D community into the spotlight in the EU. Global advocacy for curative T1D research is essential to achieving Breakthrough T1D’s mission, and continued collaboration with EU policymakers will get us there faster.”
Lynn Starr
Chief Global Advocacy Officer
“International efforts to accelerate global adoption of T1D cures will become increasingly important as newer, emerging cell therapies become available to people with T1D. Conversations like these with EU policymakers is bringing this urgent need to the forefront.”
Thomas Danne, M.D., Ph.D.
Chief Medical Officer, Global
“Cell therapies are accelerating through the clinical pipeline faster than ever. We need to act now on a global scale to ensure that people with T1D around the world can access these transformative therapies. This meeting is a significant step toward that goal.”
Sanjoy Dutta, Ph.D.
Chief Scientific Officer
Global problems require global solutions. This meeting served as a critical launching point for a continued partnership with the EU to fill gaps and address unmet needs for the T1D community. Building relationships and fostering long-term partnerships is critically important for reaching our common goal of bringing cures to people with T1D as soon as possible.
These important conversations between Breakthrough T1D and the EU government align with our Project ACT (Accelerate Cell Therapies) initiative to accelerate the development of cell therapies that do not require immunosuppression—for everyone with T1D in every country. In addition, through international Centers of Reference, Breakthrough T1D’s Medical Affairs team is developing expert clinical care centers that will be trained and ready to provide cell therapies to people with T1D once they become available. We are at the forefront of global action to prepare the world for curative cell therapies.
Scientific progress takes time, money, and effort. To accelerate islet replacement therapies faster than ever, Breakthrough T1D launched Project ACT (Accelerate Cell Therapies) to simultaneously advance research, development, regulatory policies, access, and adoption of manufactured islet therapies that do not require broad immunosuppression.
We are driving toward a future in which everyone with T1D—no matter where they are—has access to therapies, treatments, and care, bringing us closer to achieving our mission of a world without T1D. The more people we have working toward our mission, the faster we will get there.
Breakthrough T1D strives to accelerate life-changing breakthroughs to cure, prevent, and better treat type 1 diabetes (T1D) and its complications. To accomplish these goals, we use a multi-pronged strategic approach, including conducting scientific studies and educating our community. In line with these goals, Breakthrough T1D recently published two peer-reviewed journal articles. One detailed burdensome unmet needs in the T1D community and identified key steps we can take to meet these needs. The other used real-world data to better understand American T1D demographics and predict changes in the next decade.
Let’s take a deeper dive into each.
This commentary reviews previously existing data across the T1D care spectrum to help demonstrate the magnitude and significance of the unmet needs faced by people living with T1D. This information is used to emphasize the urgency researchers, sponsors, and regulators must place on developing cures for T1D. The authors provide recommendations and actionable steps to overcome scientific, clinical, and regulatory challenges that will help meet these needs.
To say that the daily routine of people living with T1D is hard would be an understatement.
Insulin injections and dosage calculations. Wearable tech maintenance. Carbohydrate counting. Mealtime and exercise tracking. Doctor’s appointments. Hypoglycemia, hyperglycemia, and diabetic ketoacidosis (DKA) avoidance. It requires constant attention: 24 hours a day, 7 days a week.
The truth of the matter is that T1D management is a burdensome, demanding, and highly intensive task. There are no breaks, vacations, or time off—even overnight, it requires management. These challenges remain, even with today’s advancements in technology and the emergence of novel therapies for T1D. Simply put, we need to do more for the T1D community, and we cannot settle for the status quo.
The challenge of day-to-day T1D management compounds into long-term negative outcomes for the T1D population. Despite improvements in mortality rate, the life expectancy of people with T1D is still shorter than those without T1D.
Keeping blood glucose in a normal range is extremely difficult, and people with T1D need to be acutely aware of their insulin doses to prevent highs (hyperglycemia) and lows (hypoglycemia). Prolonged hyperglycemia leads to heart, kidney, and eye damage. Hypoglycemia can be very dangerous and a source of distress and anxiety, especially if it occurs often and eventually without symptoms (termed “hypoglycemia unawareness”).
Current technologies cannot solve the problem of hypoglycemia or make people with T1D have perfect blood sugar levels. As a whole, these challenges represent a profound emotional and mental burden for people with T1D, often leading to diabetes distress and burnout—which itself can lead to worse glycemic control. People with T1D have a tougher time managing the ins and outs of daily life because of the extreme mental and physical load of having T1D.
A longer life on its own is not the goal: it’s longer lives without ever having to think about T1D.
Breakthrough T1D envisions a world where the burden of T1D no longer exists. A world where people don’t have to manage their diabetes—they don’t take insulin, don’t have blood sugar highs and lows, and don’t develop complications. Curing T1D is our north star.
To achieve these goals, we need widespread screening, innovative research and therapies, patient-centered clinical approaches, and evolved regulatory pathways. We need to adjust the T1D paradigm and move clinical testing along at a quicker pace.
The regulatory route for new therapies determines whether companies, which have the greatest ability perform research in a quick and efficient manner, will invest their time and money into innovative T1D therapies. They are more encouraged to do so if they see defined and reasonable pathways for new therapies to reach the market—especially if healthcare systems are in place that will allow these therapies to be adopted by healthcare professionals and used by the people who need them most.
It starts with the decision-makers, who weigh the benefits versus risks of a new therapy. These decisions need to have more input from people who have a lived experience with T1D and can better decide if the benefits outweigh the risks, especially given the tremendous daily burden of living it. Clinical testing should broaden to include more populations of people with T1D—not just those who have severe disease—because nearly everyone has the chance to benefit. As the authors state in the commentary:
The magnitude of benefits required to outweigh a product’s risks should be determined by people living with T1D and no one else.
To further optimize T1D clinical trials, Breakthrough T1D and other experts have pushed for the validation of C-peptide, a biomarker for the body’s insulin production, as a clinical trial endpoint. Compared to the currently used endpoints, C-peptide would provide easier assessments and shorter clinical timeframes, thereby making the process of T1D therapy development more streamlined—and bringing these data to decision-makers sooner.
Once better clinical endpoints are validated, more personal experiences are incorporated into clinical trials, and the regulatory path to market is clear, companies will be encouraged to invest in T1D research programs, thereby speeding up research, innovation, and progress along the clinical pipeline—getting life-changing therapies into the hands people with T1D faster than ever.
This publication will be shared broadly with regulators, legislators, payers, and the T1D research community to encourage research, innovation, and funding and advocate for quicker, more efficient clinical testing and regulatory pathways to approval.
I think the misperception that the therapies available today are good enough is one of the most insidious challenges to ushering in the era of T1D cures…Today’s therapies do not offer the freedom from diabetes that people living with the disease want…I believe when we fully appreciate the daily experiences of people living with T1D, and when we use these experiences to guide our research development and regulatory decisions, we will also then have clear pathways for new therapies that meet these needs.”
This is a call to action for everyone working in the T1D space. The overarching purpose is to foster awareness of these unmet needs and the urgency with which we must act as a community to address them—by working together and collaborating across the pipeline of T1D management.
Read on to learn more about the population of people living with T1D with these unmet needs.
The purpose of this study was to identify key T1D demographics in the United States and predict how these demographics will change over the next decade. Using healthcare insurance claim datasets, population growth projections, and existing literature, the authors modeled T1D demographic changes between 2024 and 2033.
This study was funded by Breakthrough T1D in collaboration with the T1D Index team so that these data can be incorporated into the Index. (Disclaimer: the T1D index uses multiple datasets and publications to predict the number of people living with T1D, which may explain discrepancies in Index estimates and predictions from this study).
Incidence
The number of new T1D diagnoses in a given time period.
Prevalence
The total number of people with T1D (new and existing diagnoses) in a given time period.
Number of people in the U.S. living with T1D.
Average age of people living with T1D.
Percent of people with T1D who are 20–64 years old.
Percent of people with T1D who are over 65 years old.
Percent of people with T1D who have commercial health insurance plans. Other coverage includes Medicare (30%) and Medicaid (15%).
Number of people in the U.S. living with T1D (due to increase in T1D incidence and improved survival from devices).
Average age of people living with T1D.
Percent increase in T1D population that aged 65 and older (mostly due to aging of the current T1D population).
Percent increase in T1D population that is aged 10 and younger.
Percent of people with T1D who have private/commercial health insurance plans. Other coverage includes Medicare (30%) and Medicaid (17.4%).
Percent increase in T1D population who will use Medicaid.
Despite significant advances in T1D technology, therapies, and care management, the T1D population still faces a greater risk of complications and a higher mortality rate. Breakthrough T1D leadership will use key information from this study to inform future strategic research and advocacy efforts.
This data gives us an opportunity to quantify key information about our community to inform decision-makers…With better data specific to those with T1D, we can ensure that we’re advocating for solutions that not only expand access but also promote a better health care system for those with T1D.”
These data will help inform elected officials and payers about how healthcare policies may ultimately affect the T1D community—ensuring that the policies in place are having the greatest impact they can. The next phase of the project will analyze key demographic information in the context of access to cell therapies.
The ultimate goal is to ensure that everyone with T1D has access to the therapies, technology, and care that works best for them. By understanding T1D population demographics, Breakthrough T1D can make the most informed decisions possible as we move toward our goal of a world without T1D. We call on regulators, legislators, payers, and T1D researchers to take urgent action to meet the unmet needs of the T1D community now and in the future.
JDRF is now Breakthrough T1D!
As the leading global type 1 diabetes (T1D) research and advocacy organization, we’re here to make every day life with T1D better, and we won’t stop until the condition is a thing of the past. That means powering research to cure, prevent, and better treat T1D and its complications—and ensuring that the entire T1D community has access to the tools they need to thrive.
After an exhaustive process, we discovered that we needed a name that reflected who we are—and where we’re going.
After an exhaustive data-gathering process we learned a few things.
It was time to carry the momentum created by more than 50 years of research, advocacy, and community into a brand that reflected who we are, where we’ve come from, and where we’re going.
We are Breakthrough T1D.
“Our name and look have changed, but our mission has not! Breakthrough T1D has played a pivotal role in nearly every major T1D breakthrough in history—and our work has ensured people have access to these advances. We are executing an ambitious plan to drive cures, and our job won’t be done until everyone can take their diabetes devices off for good.”
Aaron J. Kowalski, Ph.D.
Breakthrough T1D CEO
Over the past 50+ years, we have invested billions in T1D research and brought in billions more through our strategic partnerships. Like our mission, our core research strategy has not changed. Our research team, led by a group of volunteers, all of whom have a direct connection to T1D, will continue to pursue cures through cell therapies land disease-modifying therapies. They will aim to improve the lives of those affected by T1D by developing drugs, devices, and interventions so that the T1D community is healthy enough to take advantage of cures when they arrive.
“This is the most exciting time in the history of T1D. Our work directly led to the development of automated insulin delivery systems and the first FDA-approved therapy to delay T1D onset. You made that happen. Every family Walk team, advocate, and partner played a part. Thanks to decades of work by this organization and our community, we know what cures are going to look like. Thanks to our research, people have received transplanted islets in clinical trials and are making insulin again. We will continue to work tirelessly until we achieve the ultimate T1D breakthrough: Cures.”
Sanjoy Dutta, Ph.D.
Breakthrough T1D Chief Scientific Officer
Advocacy is critical to Breakthrough T1D’s ability to lead the way to improving lives today while working toward making this disease a thing of the past. With the support of our incredible grassroots advocates, our work helps advance treatments, influence policy, and improve access to care for those all over the world who need it.
What does this look like?
It looks like continually working for the renewal of the Special Diabetes Program, which has contributed over $3.4 billion to T1D research since its inception over 20 years ago; a streamlined regulatory process that expedited the approval of automated insulin delivery systems by years, and hundreds of thousands of advocates using their voices to champion causes critical to theT1D community—such as affordable insulin—with their Members of Congress.
“Breakthrough T1D advocates on behalf of the entire T1D community. With the help of our incredible grassroots advocates, we make sure key government agencies and Members of Congress know who we are, what we’re advocating for, and how they can help make T1D a thing of the past. Our advocates have helped make so many breakthroughs possible—and we’ll continue to support this community until cures are a reality.“
Lynn Starr
Breakthrough T1D Chief Global Advocacy Officer
Breakthroughs aren’t just new therapies coming to market or exciting new advances—they’re also personal. They happen when advanced T1D management technologies help someone improve their time-in-range. Or when a parent secures a 504 plan for their child. And Breakthroughs happen when T1D families and individuals come to our events—from community summits to local parent coffees, or Walks and Rides—and find an engaged, supportive community of people who just like them are impacted by T1D.
“Everything we do is powered by you—our community. No matter where you are on your journey, we have information, resources, tools, and community connections to help you take on the challenges of T1D and live healthier and happier.”
Kristin Jahnke
Breakthrough T1D AVP, Community Engagement
Breakthrough T1D is knocking on the door of something big. Giant leaps are happening nearly every day. You have gotten us to where we are today—and you can help us get to the finish line faster. So that you, your loved ones, and people everywhere can enjoy a world free from the burden of T1D. A world where people don’t have to manage their diabetes—don’t take insulin, don’t have blood sugar highs and lows, and don’t develop complications. With your ongoing support, we won’t stop until this condition is a thing of the past.
Learn More About Our New Brand.
Learn More About Our Organization.
Lisa Fishbone Wallack, an attorney by training and long-time volunteer leader in the greater New England area, will serve as Breakthrough T1D International Board of Directors (IBOD) Chair, succeeding current Chair Grant Beard. Matt Varey, a senior executive at Royal Bank of Canada (RBC) and dedicated volunteer leader in the greater Toronto, Canada, area, will serve as Breakthrough T1D IBOD Vice Chair, succeeding current Vice Chair Michelle Griffin.
Lisa’s and Matt’s terms as Chair and Vice Chair, respectively, begin Monday, July 1, 2024.
Lisa is a long-time volunteer leader of Breakthrough T1D’s Greater New England Chapter, first getting involved with Breakthrough T1D when her parents Marilyn and Dr. Gerald Fishbone were among the founders of Breakthrough T1D (then known as “JDF”) after her brother Scott was diagnosed with T1D in 1969 at the age of 18 months, and then increasing her involvement after her son Harris was diagnosed in 2001 at the age of 5.
Locally, Lisa has served as President of the Greater New England Chapter Board and remains active with the chapter. Nationally, she has been a member of the IBOD for nine years and has served as Vice Chair of the IBOD, as Chair of the Talent and Compensation Committee, and as Chair of the Nominating and Governance Committee.
Lisa is an attorney by training and is a volunteer leader at numerous other community organizations, leading annual, capital, and comprehensive campaigns and strategic committees.
Lisa and her husband Neil are proud to be leadership donors to Breakthrough T1D as well as donors to Breakthrough T1D’s T1D Fund. She and her family participate in all Breakthrough T1D programs, including the Walk and Gala, and she supports Neil’s participation in endurance events including the Boston Marathon, the Breakthrough T1D Ride program, and Ironman Triathlons, which collectively have raised more than $1.4 million for Breakthrough T1D.
For their outstanding and continued support of Breakthrough T1D, Lisa and Neil will be honored at the Greater New England Chapter’s Gala on Saturday, April 6.
Lisa graduated with a B.A. in The Biological Basis of Behavior from the University of Pennsylvania and with a J.D., summa cum laude, from the Benjamin N. Cardozo School of Law. In addition to their son Harris, Lisa and Neil have a son Perry and a daughter Sydney. They live in Weston, Massachusetts.
Matt Varey is currently a senior executive at Royal Bank of Canada (RBC)—the largest financial institution in Canada and one of the largest and most trusted in the world.
As Senior Vice President, Matt is responsible for national leadership of more than 4,500 Canada-based employees entrusted with important client life events including personal investments, mortgage financing and group benefits, totaling more than $100 billion of human trust annually. Prior to joining RBC in 1987 and taking on a wide range of senior management and executive positions within RBC, Matt was Vice President and General Manager of RBC Suisse, RBC’s Global Private Banking operations in Geneva, Switzerland.
Matt is an ardent supporter of Breakthrough T1D’s commitment to improving the lives of every person living with T1D and driving breakthroughs to cure the condition. His association and commitment to Breakthrough T1D started in 2001 and he currently serves on the Breakthrough T1D International Board of Directors and Breakthrough T1D Canada Board of Directors. His diverse international leadership experience will be instrumental in continuing Breakthrough T1D’s purposeful global mission and navigating the organization’s path forward in partnership with his Breakthrough T1D Board of Directors colleagues.
His previous Board responsibilities included Chair of the Board of Breakthrough T1D Canada and Board member of the Mutual Fund Dealers Association of Canada.
Matt graduated from McMaster University and currently resides in Oakville, Ontario, Canada, with his wife, Dr. Andrea Jack.
This new leadership coincides with an era of unprecedented T1D breakthroughs championed by Breakthrough T1D.
“We are in a golden age of advanced medicine and continue to see incredible progress in T1D cures research—in both disease-modifying therapies and cell therapies,” said Aaron J. Kowalski, Ph.D., Breakthrough T1D Chief Executive Officer. “As the leaders of our International Board of Directors, Lisa and Matt will ensure we will continue to drive cures and other life-changing breakthroughs forward through scientific advancements and advocacy.”
“We thank Grant and Michelle, who amplified our global efforts to improve lives and accelerate cures. There has never been a more exciting time for our mission as cures are now a matter of when, not a matter of if,” Kowalski said. “The potential for transformation is nothing short of electrifying and we look forward to the progress to come during Lisa’s and Matt’s tenure.”
IBOD is the governing body for Breakthrough T1D and is tasked with accelerating the organization’s mission progress toward life-changing breakthroughs to cure, prevent, and treat T1D and its complications. Learn more about Breakthrough T1D’s volunteer and staff leadership.
JDRF’s TypeOneNation Summits offer education and inspiration on a variety of important topics to help people with type 1 diabetes (T1D) live their best lives.
Our four-part 2023 TypeOneNation virtual series kicked off with “January Jump Start: Real World Tips for Exercise and Nutrition with T1D.”
Hosted by dynamic sports journalist Jordan Ligons Robinson, the event featured a group of active individuals who shared their personal journeys with T1D. They explored how nutrition and exercise can have a positive impact on T1D management and mental wellness. Check out some of the highlights below!
Catherine Rogers McManus, Ph.D., RDN, LD, Assistant Professor and Vice Chair for Education at Case Western Reserve University, discussed carb intake and insulin dosing before, during, and after exercise. She also shared a very popular recipe for Veggie Egg Muffins, perfect for post-workout recovery:
Click to enlarge
Watch her presentation for more tips on what foods to eat, how much protein you need, and why it’s important to stay hydrated when exercising with T1D.
Actor and recording artist Breana Raquel talked to Jordan about her T1D diagnosis at age 18. Raquel shared her concerns about the impact T1D would have on her career (spoiler: it didn’t), and what it’s like when her continuous glucose monitor (CGM) beeps during an audition.
Jordan and Breana also did a fun comparison of what they carry in their T1D supply bags and what they can’t leave home without. Watch now!
Mike Riddell, Ph.D, a Professor in the School of Kinesiology and Health Science at York University, did a deep dive into the latest research on the impact exercise has on T1D management. He provided an example of a “prescription” for physical activity for people with T1D:
Click to enlarge
Watch his presentation to learn more about how exercise can improve your time-in-range (TIR) for up to 24 hours post-workout!
Fitness trainer Jay Maryniak wrapped up our event with his story about overcoming the challenges of being diagnosed with T1D in his late 20s. He even shared a fun workout video to encourage people with T1D to start a home fitness routine. Watch it now!
Sign up for our upcoming TypeOneNation virtual sessions at https://www.breakthrought1d.org/t1d-community/summits/.
