The Helmsley Type 1 Diabetes Program was launched in 2008 with the goal of having a positive impact on people living with type 1 diabetes (T1D). We partner with key players across the T1D ecosystem – people with T1D, physicians, researchers, caregivers, other funders, government agencies, pharmaceutical companies, device makers, insurers and grassroots and community organizations – in order to advance research, treatments, technologies and services that ease the burden of living with T1D. To date, the program, which has rapidly become the largest private foundation funder in T1D, has made in excess of 350 grants totaling nearly $300 million in pursuit of this goal.
The Trust has developed a holistic funding approach that seeks to maximize the impact of our grantmaking across the continuum of interventions that can improve health outcomes for those with T1D and strengthen the effort to someday eradicate this disease. The program funds projects aimed at accomplishing three strategic goals: Understanding the Disease, Developing Better Treatments and Improving Care and Access. We support innovative, often underfunded, initiatives that carry with them moderate-to-high risk profiles, but offer the opportunity of significant advances for people with T1D. We encourage bold thinking and new approaches. We look to foster novel collaborations that leverage the best minds and efforts across disciplines and institutions. We make meaningful investments, not only of capital but also of our deep staff knowledge and expertise that can be marshalled on behalf of our grantees and their efforts.
Understanding the Disease
Type 1 diabetes develops because of genetic and environmental factors. To date, the majority of research around T1D has focused on the development of treatments that mitigate the effects of the disease or slow its progression and, of course, on an elusive cure. However, despite significant investments, a cure is still far off in the future, the causes of the disease remain unknown and there are no viable prevention strategies. As such, a key priority of our program is supporting research that seeks to illuminate how T1D develops and identify ways to prevent it. Our grants toward this strategic goal fund new and existing efforts in primary prevention research – that is, science that explores approaches to thwarting the disease before it starts – and the development of infrastructure for primary prevention clinical trials. Though this strategy, we also fund efforts to collect, store and make widely available human tissue samples in order to facilitate more precise and relevant research into avenues of prevention.
Developing Better Treatments
While our ultimate goal is to prevent T1D, we recognize that this is not likely to happen for many years. As such, our program invests heavily in the development of new treatments and technologies that will ease the burden of living with T1D. We support many of the most prominent and innovative academic and scientific research institutions across the nation. Given the relatively small market opportunity that T1D offers to for-profit medical device makers as compared to many more prevalent diseases, the Trust also actively partners with leading and up-and-coming players from industry to de-risk and speed the development of new technologies that will help manage the disease. A primary focus of our funding in this area has been supporting early-stage research toward commercial development of automated insulin delivery systems that can lessen the burden of disease management and, most critically, improve health outcomes for people with T1D.
As part of our work to spur breakthrough therapies and technologies, we seek to support efforts to optimize the clinical development process. To that end, the Trust supported the creation of the T1D Exchange, a nonprofit organization with a groundbreaking patient engagement platform designed to accelerate all aspects of drug and device development. The Exchange integrates a clinic network of 65+ diabetes clinics across the U.S., a clinic registry with data from 26,000+ people with T1D, a biorepository housing a collection of clinically annotated biosamples, and Glu, a patient/caregiver online community with more than 12,000 members. Data generated by the Exchange are helping to improve standards of care and accelerating projects of academic and industry researchers worldwide.
Improving Care and Access
T1D is an unrelenting disease that requires constant management, and accessing quality specialized health care can be challenging, particularly for economically disadvantaged and rural populations. Our program supports the development of innovative models of service delivery and efforts to make these models broadly accessible to people with T1D. Recently, the Trust has funded models of care that address the shortage of endocrinologists in the U.S., including the use of telemedicine and case-based mentoring to train primary care physicians in rural areas to provide high quality care to people with T1D. On a global level, the Trust is funding an initiative to chart the worldwide insulin market and identify barriers to access and areas of need. Another globally-focused grant seeks to develop scalable pediatric diabetes detection models in Haiti and Rwanda that can be replicated in under-resourced countries around the world.