It’s a truly stunning statistic: Nearly 80 percent of people with type 1 diabetes (T1D) develop diabetic retinal disease. That means that every person with T1D needs to be concerned about development of this complication, which too often still results in significant vision loss and blindness.
As T1D research progresses toward cures for the disease itself, we need to ensure that the entire T1D community will be able to benefit from those therapies when they come to fruition, while having avoided the life-limiting complications of T1D. This is why we are funding research to reduce the occurrence of diabetic retinal disease and halt its progression, protect the retina from the deleterious effects of diabetes, and advance therapies that restore vision that has been lost for those suffering from this all-too-common complication.
The retina is a thin layer of specialized nerve tissue on the back wall of the eye. It converts light into electric signals that are transmitted to the brain where the images we “see” are generated. The center of the retina, called the macula, is responsible for the sharp clear vision needed for reading and other daily tasks. Abnormal leaking from blood vessels damaged by diabetes can lead to swelling of the macula and vision loss. Diabetes also causes direct damage to nerve cells of the eye, including cells in the periphery of the retina. These changes stimulate the development of abnormal blood vessels, which are fragile and can bleed and further destroy the nerve tissue around them, scarring the retina and putting people at high risk for low vision and blindness.
The Time Has Come
While the tools to manage glucose levels are of great importance in forestalling the development of vision-threatening diabetic retinal disease, we must come up with more ways to preserve vision, protect the retina from all the impacts of diabetes, and directly address restoring lost vision and “curing” blindness resulting from diabetes.
The Mary Tyler Moore & S. Robert Levine, MD Charitable Foundation and JDRF have recently taken a bold new step to accelerate the development of methods to not only prevent the occurrence of diabetic retinal disease, but also to restore vision in people who have low vision or have been blinded due to diabetes. This bold step is the “Restoring Vision Moonshot.”
The initiative honors the enduring legacy of Mary Tyler Moore, her life with diabetes, and her commitment to creating a world without T1D. As the International Chairman of JDRF from 1984 until her death in 2017, Mary helped raise billions of dollars for research to cure T1D and its complications. As she worked tirelessly to relieve the burdens of T1D for others, the disease impacted her own life, significantly, resulting in near-blindness from diabetic retinal disease.
Progress to Date
The Restoring Vision Moonshot began with a workshop that brought together experts in diabetic eye disease and related disciplines, representatives of the biotech and bioinformatics industries, research funding entities, regulatory bodies, government agencies, and people with diabetes. This workshop identified the global scale of the problem, detailed the state of the science, and outlined scientific needs and opportunities, which helped establish a “roadmap” for next steps.
First, you need a common language of how everyone involved in the endeavor assesses and describes the diagnosis, risk, progression, and response to treatment. This recognition was the driver behind starting the Restoring Vision Moonshot with a diabetic retinal disease (DRD) staging update, something that had not been done in over 40 years.
The DRD Staging Update benefits from the leadership and participation of over 50 global experts, and aims to develop an updated, multidimensional, staging system for DRD that could be used to:
- Diagnose DRD earlier in its progression,
- Better define DRD severity,
- Incorporate the patient perspective,
- Predict and measure response to therapy,
- Support clinical trials evaluating novel therapies, and
- Enhance clinical decision-making.
Organized into 6 Working Groups , each one is preparing a paper for submission for publication in a major ophthalmology journal later this year, which will include their recommendations for a new DRD Staging System and summaries of knowledge gaps in need of further research.
But there’s more that needs to be done.
The Road Ahead
To overcome barriers, bridge gaps, and accelerate progress to cures is complex and not without cost.
In response, Restoring Vision Moonshot efforts will be multi-focused, including accelerators and mission-driven programs, such as:
- a human eye biorepository being established at the Elizabeth Weiser Caswell Diabetes Institute at the University of Michigan (which is also home to a JDRF Center of Excellence) to enable researchers to perform groundbreaking “omics” analyses of human samples to better understand the disease and its progression and identify targets for therapeutics development.
- taking promising biomarkers identified in the DRD Staging Update and performing the requisite research to support their validation—an essential step to accelerate therapy development and FDA approval.
- standing up a retinal image bank with millions of images linked with clinical records, to provide the data needed to develop artificial-intelligence-based diagnostic systems to diagnose DRD earlier, improve clinical outcomes, and reduce health care inequities.
- supporting the science-with-a-mission research programs necessary to regenerate or replace retinas damaged by diabetes.
To perform these ambitious but achievable efforts successfully is expensive.
But for the millions of people with diabetes, whose fear of vision loss and blindness is an unfortunate reality, the cost is much more: Their personal liberty and autonomy.
If you are interested in taking part in this historical undertaking, please contact Ardy Johnson, Chair, Fund Development, Restoring Vision Moonshot and former Director, JDRF.
Mary Tyler Moore’s legacy will continue to inspire and drive JDRF and the innovative scientists working to cure blindness through this initiative, as we continue to work toward a world without T1D and its complications.
 DRD Staging Update Working groups were organized to address the multifaceted aspects of DRD, including: 1) Retinal Vascular Disease, 2) Retinal Nerve Disease, 3) Basic and Cellular Mechanisms of DRD, 4) Systemic Health Factors in DRD, 5) Visual Function, and 6) Quality of Life.