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The Mary Tyler Moore Vision Initiative—the Roadmap to a Cure for Diabetic Retinal Disease

Mary Tyler Moore was an entertainment pioneer whose body of work set the gold standard performers strive for to this day. She first charmed audiences in the 1960s sitcom classic The Dick Van Dyke Show, but it was her groundbreaking role in the 1970s hit The Mary Tyler Moore Show that reshaped how women were portrayed on TV. Embracing for the first time the possibilities of life as a single career woman, she epitomized independence, optimism and loyalty, and turned the world on with her smile.

Diagnosed with type I diabetes (T1D) at age 33, Mary stepped into another defining role in the 1980s. Named the first International Chairman of the Juvenile Diabetes Research Foundation (JDRF, now Breakthrough T1D) she was arguably the original celebrity health activist. In partnership with her husband of 33 years, S. Robert Levine, M.D., Mary continued to advocate tirelessly for diabetes awareness, patient support, and research funding until her death in 2017.

S. Robert Levine, M.D.

“Of all the complications of diabetes Mary endured, vision loss was the most devastating,” Dr. Levine says. “Diabetic retinal disease (DRD) robbed Mary of her sight, and with it, her independence and her joy.”

To realize Mary’s dream of a world without vision loss from diabetes, Dr. Levine founded the Mary Tyler Moore Vision Initiative (MTM Vision) in 2018, bringing together stakeholders from academia, industry, government, non-profits, and entertainment, as well as technology innovators, patients and families. The initiative is a hub for workshops, symposia, scholarly publications, public awareness campaigns, the fostering of cross-sector collaborations and data sharing, and the development of critical path research resources and tools. Through these efforts, MTM Vision is accelerating the pace of discovery and translating scientific advances into new ways to preserve and restore vision in people with DRD.

Michigan Medicine has played a pivotal role in MTM Vision from the start. Both the Elizabeth Weiser Caswell Diabetes Institute (CDI) and the Kellogg Eye Center are MTM Vision partners, along with the Beetham Eye Institute, Joslin Diabetes Center at Harvard Medical School, Breakthrough T1D, and the Entertainment Industry Foundation. Dorene Markel, M.S., M.H.S.A., who recently retired from leadership at the CDI and the Brehm Center for Diabetes Research at U-M, serves as managing director and senior advisor. Kellogg’s Thomas Gardner, M.D., M.S., serves as co-scientific director, along with Joslin’s Jennifer Sun, M.D., M.P.H. Patrice Fort, Ph.D., M.S., directs the MTM Vision Ocular Biorepository and Resource Center, housed at Kellogg.

An ambitious, multiphase roadmap guides MTM Vision. Significant progress has been made on the first phase: a DRD cure platform to address three fundamental gaps in the DRD research pipeline:

#1: Staging based only on vascular damage tells only part of the story.

“DRD is not just a microvascular complication of diabetes, it involves the entire neurovascular unit, and vascular changes don’t appear until the disease has advanced,” explains Dr. Levine. “We need a more wholistic DRD staging system and severity scale so DRD can be tackled early, and from every angle.”

Between August 2023 and April 2024, each of MTM Vision’s six working groups of global experts published recommendations for modernizing DRD staging. Together, they form the basis for a staging system that considers not only vascular, but neuronal, cellular, systemic, functional and quality of life measures.

#2: You can’t expect to cure a human disease without studying it in humans.

Unlike other tissues in the body, the retina cannot be biopsied. Researchers need access to reliably preserved and cataloged postmortem eye tissue and fluids for study. The Mary Tyler Moore Vision Initiative’s Ocular Biorepository and Resource Center was launched at Kellogg in 2022 to fill that need.

“In 2024 we began the process of characterizing the initial samples collected, which include eyes from donors with and without diabetes, and with and without DRD in its different stages,” says Dr. Fort. “Our approach also evolved this year based on feedback from our different stakeholders and partners, including expanding the type of samples collected (blood samples along with tissue and eye fluid) as well as modification of the process, further increasing value.”

#3: We need new ways to measure the trajectory of DRD.

How the evolution of a disease is characterized— measures of its severity, and how it may progress, stabilize or reverse over time – informs the identification of both biomarkers for targeted treatments and end points for evaluating the effectiveness of those treatments. In DRD research, that means arriving at consistent ways to gauge how patients feel, how well they see, and what’s happening in their retinas.

For example, some researchers hypothesize that changes in visual function might precede retinal damage in DRD visible on retinal photographs or by ophthalmoscopic exam. That would make visual function a relevant therapeutic end point. MTM Vision led the design and is co-sponsoring, in partnership with the DRCR Retina Network, a federally funded clinical research organization, two upcoming observational clinical studies to evaluate a range of advanced technologies that objectively measure visual function.

In addition to the roadmap, MTM Vision’s other imperative is raising awareness and funding for DRD research. 2024 marked the debut of a public service announcement narrated by Mary’s longtime friend Kevin Kline and featuring three women whose lives and careers were inspired by Mary: Julia Louis-Dreyfus, Oprah Winfrey and Reese Witherspoon.

“With Mary as its north star, MTM Vision is truly meeting the moment,” says Dr. Gardner. “Robert is providing inspiration, focus and leadership to accelerate DRD discovery where it’s needed most–at the intersection of endocrinology and ophthalmology.”

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