Mary Tyler Moore Vision Initiative
Sydney Colvill
The Mary Tyler Moore Vision Initiative has a lofty goal: To halt and reverse vision loss from diabetes. Here’s one woman’s hope for a clearer future.
Several decades ago, blindness and severe vision loss occurred in 40 percent of people with diabetes, but we have made progress since that time. Early detection, better tools to manage type 1 diabetes (T1D), and timely, appropriate treatment can reduce the risk of blindness by over 95 percent. Nonetheless, tens of millions of people worldwide still suffer from limited vision and blindness due to diabetes and the side effects of current treatment methods. There is a real need to redouble our efforts to develop advanced and effective new therapies to restore vision and “cure” blindness in those so affected, and to prevent vision loss in the first place in people at risk.
Through the Mary Tyler Moore Vision Initiative, a special initiative of the Mary Tyler Moore and S. Robert Levine Charitable Foundation and JDRF launched to honor Mary’s contributions to diabetes awareness and research, JDRF is supporting research to find new ways to prevent the development of diabetic retinal disease, arrest its progression to preserve visual function, and restore lost vision.
Vision loss steals more than the ability to see
For Sydney Colvill, 48 years of battling T1D has meant unwavering commitment to balancing blood sugars as best she could, only to—as millions experience—lose her own vision due to diabetic complications of the eyes.
Vision loss has stolen much from her: Her nursing career, her peripheral vision, her favorite pastimes of horseback riding and tennis, her overall freedom, and even her choice in pets (“I can handle cats, but I just cannot walk dogs safely anymore,” she said).
All that and still she wakes up every day choosing to live well, despite suffering diabetes’ most feared complication—vision loss due to diabetic eye disease.
But truth be told, she admits, she’d pretty much lost hope for a better future for diabetic eye disease and vision loss.
All that changed for Colvill when, this past September, she attended an event to learn more about The Mary Tyler Moore Vision Initiative.
Drawn there via excitement to participate in the diabetes’ community in person again after the COVID years, she wasn’t expecting much more than a friendly meet up with long-time friends.
But as she stood in that room listening to Mary Tyler Moore’s husband, Dr. S. Robert Levine, speak, a familiar feeling pumped through her veins. And while it wasn’t a magic elixir to clear her vision, she said, it was the next best thing.
“That was the night hope came back into my life. Robert has taken his love for Mary—his complete understanding of what she was dealing with—and used it for me. For all of us,” she said.
Colvill’s diabetes story is similar to Ms. Moore’s.
Like Moore, Colvill was surrounded by forward thinking supporters thanks to her mother’s involvement with JDRF (then JDF; her mother, Jacqueline “Jake” Colvill, started the still-thriving JDRF Houston chapter and went on to be an international leader in diabetes research funding). Like Moore, she has had access to the newest of tools early on and insights on the most promising ways of treating the disease. (“I had one of the very first glucometers,” she remembered, “and I used it often. That was before tight control was really accepted. One doctor said to me of finger stick checks, ‘You’re going to do that twice a day? Why?’”)
Like Moore and millions of others with T1D, Colvill began the decline into life-altering vision loss about a decade into her diagnosis.
She started with determination, and hope
Colvill can remember the moment she was diagnosed with T1D 48 years ago.
She’d been brutally thirsty in the weeks prior. “I was chugging cases of Tab and switched to lemonade to make drinking all that easier,” she remembered of her 10th grade year.
“Then I lost 10 pounds in a week. The doctor said, ‘Give her regular Coke and jello,’ Can you imagine? So my mom took me to the ER and when I went to put my pants back on after being checked, they fell off. Like, to the ground,” she said.
That was the eye opener for the doctors and, in an instant, her life changed with the T1D diagnosis. Colvill’s reaction? To take it on full force.
“I knew it was something I’d have to learn and learn well—and stick to,” she said of living with T1D. Unusual for a 10th grade teenager, true. But Colvill was determined to fight for a long, healthy, and clear-visioned life.
“I always cared and I have always tried,” she said.
But the reality of what “best” looks like in T1D treatment results became clear quickly.
“You try and try. But what can you do about stress? Or pain? They come in life and when they do, I can bounce so high and so fast,” she said.
That led her to embracing Multiple Daily Injections (MDI) decades before medical experts endorsed it. “I mean: I did MDI way before anyone else.”
Complications came along
About a decade into her battle, despite focus on her vision (“I always was aware it was necessary to watch the eyes,”), she began to experience floaters, vision loss, and more.
“I had floaters so I started getting laser [treatments] about 10 years in,” she said. Those were repeated, something doctors now know can impact vision negatively long term when done too often.
“In the dark, it was taking longer and longer for my eyes to adjust,” she said. “Gradually, it was becoming more and more of a challenge.”
She flew to Montana, where smoke from a wildfire had fogged the air. When it lifted, she was excited to take in the view—only to realize she could not see it clearly. “Everything was kind of wavy,” she remembered.
It was officially diabetic retinopathy, and bleeding from the fragile blood vessels that the body creates as an imperfect response to the diminished blood flow to the retina caused by diabetes.
That led to the first of many vitrectomies she’d endure.
She was working at the time in the endocrinology department of Kelsey Seybold Clinic, where her background in nursing and research project management was a perfect fit.
Walking out of work one night after the Montana trip, she stumbled over a speed bump (vision loss can do that to a person), broke her wrist, and struggled with high blood sugars from the stress and pain.
Soon after that, while driving to work after a workout, she said, “BOOM. I had a major bleed [in my eye]. I knew right then things were going to change.”A second bleed came quickly, as did more surgeries. But most of all came a complete change in her life that continues to this day.
Despite her attention to diabetes care, her mother’s dedication to forwarding progress, and their embracing of the best and the new, Colvill, like Mary Tyler Moore, added her name to the list of people who tried their best and still had their vision stolen by T1D.
She was no longer able to do the job she loved and had to leave. Today, she cannot go out at night, recognize a face from more than four feet away, read her own handwriting (“It can take all morning for me to compose a note. And it’s not just about what you can read; it’s how long it takes you to read it,” she explained). There’s no horseback riding and no tennis.
It’s understandable that her hope would fade.
“I’m always optimistic but man, my eyes have just been through so much,” she said.
A light in the tunnel
Now, with her knowledge of the Mary Tyler Moore Vision Initiative and the plans Dr. Levine has to honor his late wife and her battle with near blindness from diabetes, Colvill feels inspired and hopeful—more for others than herself, but even for her own future.
She’s ready to step up, she said, in whatever way she can.
“Oh my goodness: If they ever need tissue to research, I’m your gal,” she said.
“My great hope is I can help prevent this from happening in other lives, and that others never have to go through what I’ve had to go through,” she said.
The Mary Tyler Moore Vision Initiative has solidly restored that hope in her, she said.
She understands how the program not only is fueled by passion, but also has the oomph and reach to do that thing she knows makes a difference in research: Bring minds together.
“The coming together of academia and industry this is making happen—the minds and the technology—is so inspiring,” she said, “and I know from my experience it is exactly what needs to happen.”
“To me, it’s all about not having people have to stop working at the job they love, not have to stop riding the horses they adore, not having to put limits on their lives because of diabetes-caused vision loss,” she said.
That Dr. Levine is heading it up matters much to her, she said.
“His passion and his ability to convey why this is so important, and why vision loss can be so lifechanging to people makes a big difference. It comes firsthand—and you feel that. When I met Robert, it was like: Thank you. It’s the first time I heard someone really get it, but also offer up solutions.”
“When Robert talked about what Mary experienced; losing the ease to just walk across a room without help; or losing dancing. The challenges I have people don’t realize. But Robert does. And he wants to do something about it,” she said.
Colvill intends on continuing to follow and support the Initiative.
And, she’s newly willing to return to some personal hope as well.
“I’m shooting for 30, 40 more years of living,” she said. “And now I’m hoping they can find a way to rejuvenate blood supply to my retina and restore visual function, too. It’s far off but…you never know. I’ve got hope back in my life.”
Imaging Modalities for Assessing the Vascular Component of Diabetic Retinal Disease: Review and Consensus for an Updated Staging System
Ophthalmology Science (December 2023) published a Mary Tyler Moore Vision Initiative Working Group paper “Imaging Modalities for Assessing the Vascular Component of Diabetic Retinal Disease: Review and Consensus for an Updated Staging System.” An in-depth review that explores the current scientific knowledge about different ways of taking pictures to check the blood vessels in the eyes of people with diabetic eye disease was conducted by the world’s experts to improve how we classify the disease in the future, identify deficiencies, and make recommendations for improvement. Professor Tien Yin Wong, MD, Co-Chair of MTM Vision’s Vascular Working Group, presided over the review written by Tien-En Tan, MBBS (Hons), FRCOphth, et al., for the DRD Staging System Update Effort, a project of MTM Vision.
Role of Systemic Factors in Improving the Prognosis of Diabetic Retinal Disease and Predicting Response to Diabetic Retinopathy Treatment
Ophthalmology Science February 2024 published the Mary Tyler Moore Vision Initiative’s Working Group paper titled: “Role of Systemic Factors in Improving the Prognosis of Diabetic Retinal Disease and Predicting Response to Diabetic Retinopathy Treatment.” An in-depth review that explores the clinical evidence on systemic factors that might be relevant to update diabetic retinal disease (DRD) staging systems, including prediction of DRD onset, progression, and response to treatment. Authors included the Systemic Health Working Group of the Mary Tyler Moore Vision Initiative, including Joe Mellor, Anita Jeyam, Joline W.J. Beulens, Sanjeeb Bhandari, Geoffrey Broadhead, Emily Chew, Ward Fickweiler, Amber van der Heijden, Daniel Gordin, Rafael Simó, Janet Snell-Bergeon, Anniina Tynjälä, and Helen Colhoun.
Monica Oxenreiter
personal story told at our Fall Workshop by Monica Oxenreiter. Diagnosed with Type 1 diabetes in 1995, Monica’s journey, alongside her brother’s diagnosis three years later, transformed their battle into a family affair. As a delegate of the JDRF Children’s Congress in Washington, DC, Monica found inspiration in Mary Tyler Moore’s advocacy, seeing her as a role model of elegance and strength.
In 2008, Monica founded Zip the Cure to raise a hundred dollars from each of the 42,000 zip codes in the U.S. to support diabetes research, and they proudly raised $100,000, learning critical lessons in mobilizing communities around a cause.
Monica’s journey from advocacy to education, from an undergrad in biochemistry to graduate degrees in public policy and healthcare administration, reflects a path marked by growth, commitment, and a relentless drive to effect change. Her story celebrates the strength found in the community and the impact of raising awareness for a cure for diabetes.
Rationale of Basic and Cellular Mechanisms Considered in Updating the Staging System for Diabetic Retinal Disease
Ophthalmology Science (March 2024) published a Mary Tyler Moore Vision Initiative Working Group paper titled “Rationale of Basic and Cellular Mechanisms Considered in Updating the Staging System for Diabetic Retinal Disease.” An in-depth review that explores the preclinical and clinical evidence on basic and cellular mechanisms potentially pertinent to diabetic retinal disease (DRD) that might eventually be relevant to updating the DRD staging system. Authors included the cellular mechanisms working group of the Mary Tyler Moore Vision Initiative, including M. Elizabeth Hartnett, Ward Fickweiler, Anthony P. Adamis, Michael Brownlee, Arup Das, Elia J. Duh, Edward P. Feener, George King, Renu Kowluru, Ulrich F.O. Luhmann, Federica Storti, Charles C. Wykoff, and Lloyd Paul Aiello.
RPB Grant
Research to Prevent Blindness Announces New Sight-Saving Vision Research Grants
The research awards, given in partnership with the Mary Tyler Moore Vision Initiative and in honor of RPB Trustee Tom Wertheimer, will focus, respectively, on the cutting-edge areas of retinal research for Diabetic Eye Disease and data science for eye disease research.
NEW YORK – April 24, 2023 – Research to Prevent Blindness (RPB) is pleased to announce two new grants to support high-impact vision research as part of its fall grants portfolio, which is now accepting applications and will fund more than $5 million in grants for individual researchers as well as high-performing departments of ophthalmology. The new grants are the: RPB / Tom Wertheimer Career Development Award in Data Science and RPB / Mary Tyler Moore Vision Initiative Physician-Scientist Award.
RPB has two grant cycles a year (spring and fall) and provides about $10 million in grant funding annually to support sight-saving research into eye diseases and conditions that affect vision. Awards for the current grant cycle will be made in December 2023.
“RPB is very strategic in its application of research funding, so I am thrilled to announce two new individual research awards in the key areas of data science and retinal research related to Diabetic Retinal Disease,” said Brian F. Hofland, PhD, President of Research to Prevent Blindness. “Furthermore, we’re so proud to provide these awards with excellent partners. Two generous donors each gave gifts to create the award honoring RPB Trustee Tom Wertheimer, a long-standing, valued member of the RPB Board of Trustees. The Mary Tyler Moore Vision Initiative is a nonprofit led by the late Ms. Moore’s husband, Dr. S. Robert Levine, who is wholeheartedly committed to ending vision loss associated with diabetes through groundbreaking science.”
Details about each award are available below:
RPB / Tom Wertheimer Career Development Award in Data Science
This award focuses on vision research that uses artificial intelligence and/or data science to gain new knowledge related to sight-threatening conditions. This Career Development Award (CDA) builds on the success of the RPB CDA program, which supports early-career researchers in making critical discoveries prior to their first major research grant from the National Institutes of Health.
This $350,000 research award, provided over 4 years, allows for extraordinarily talented early-career vision researchers to launch their careers as independent investigators, with the support of a mentorship team. By creating a CDA in Data Science, RPB recognizes the importance of data science to the future of vision research, and medical research at large, and will provide much-needed support in the form of this prestigious award.
An assessment of RPB’s CDA program several years ago indicated that of the approximately $40 million RPB had invested into this program over 30 years, CDA grantees had gone on to garner more than $1 billion in follow-on research grant funding, a 25:1 return on investment.
RPB / Mary Tyler Moore Vision Initiative Physician-Scientist Award
This award is part of RPB’s long-standing Physician-Scientist Award program that promotes the clinical and/or basic science research of clinicians, who bring a critical commitment to patient care to their research activities.
In partnership with the Mary Tyler Moore Vision Initiative, this new $300,000 research award will focus on retinal research with an emphasis on expanding relevant knowledge and developing methods to preserve and restore visual function in diabetic retinopathy, diabetic macular edema, and diabetic retinal neurodegeneration known as Diabetic Retinal Disease, or DRD).
“I am excited to be partnering with Research to Prevent Blindness to support an outstanding physician-scientist who can help advance our understanding of Diabetic Retinal Disease, including at the molecular, cellular, and functional levels. This terrible disease stole joy and independence from my wife, Mary, and I have made it my life’s mission to end the devastation and suffering it causes in the lives of millions around the world. I am deeply grateful to RPB for their leadership in vision research and for working with me to achieve shared goals,” said Robert Levine, MD, Chairman, Mary Tyler Moore Vision Initiative.
In addition to the two new grants described above, RPB funds grants into research across all sight-threatening conditions, including glaucoma, age-related macular degeneration, amblyopia, low vision, and many more. A full list of current research grants is available on the RPB website (https://bit.ly/RPBgrants2023), including eligibility criteria and application guidelines.
ABOUT RESEARCH TO PREVENT BLINDNESS
Research to Prevent Blindness (RPB) is the leading nonprofit organization supporting eye research directed at the prevention, treatment or eradication of all diseases that damage and destroy sight. As part of this purview, RPB also supports efforts to grow and sustain a robust and diverse vision research community. Since it was founded in 1960 by Dr. Jules Stein, RPB has awarded more than $403 million in research grants. As a result, RPB has been associated with nearly every major breakthrough in the understanding and treatment of vision loss in the past 63 years. Learn more at www.rpbusa.org.
ADA 2023 Scientific Sessions
MTMVI puts the spotlight on Diabetic Retinal Disease
From June 23-26, scientists and healthcare professionals will gather in San Diego for the American Diabetes Association’s (ADA) 83rd Scientific Sessions, one of the largest conferences of diabetes researchers in the world.
Staff and scientists from the Mary Tyler Moore Vision Initiative (MTMVI) will also be there to present the initiative’s goals and approach to ending Diabetic Retinal Disease (DRD). This session which is themed around Acute and Chronic Complications of diabetes, will be held on Sunday, June 25th. Join us in room 25 for Session AC-1.5-SY15 if you’re in attendance!
Here’s the session agenda:
Creating a World without Visual Loss from Diabetes
Sunday, June 25, 2023
4:30 p.m.-4:45 p.m. The Goal of Eliminating Blindness from Diabetic Retinal Disease
S. Robert Levine, MD
4:45 p.m.-5:00 p.m. The Importance of Studying the Human Retinal Disease
Patrice E. Fort, MS, PhD
5:00 p.m.-5:15 p.m. Structure-Function Connections in Human Diabetic Retinal Disease
Stela Vujosevic, MD, PhD
5:15 p.m.-5:30 p.m. Designing Clinical Trials Based on Advanced Understanding of Diabetic Retinal Disease
Jennifer Sun, MO, MPH
5:30 p.m.-6:00 p.m. Question and Discussion Period
Image of San Diego Convention Center courtesy of Port of San Diego
Fall 2022 Symposium
In October 2022, a landmark workshop held in Ann Arbor included over 90 attendees, representing diverse backgrounds from around the globe. Participants included patients and representatives from leading biopharmaceutical, biotech, and medical device companies, JDRF, the National Institutes of Health, the American Diabetes Association, the US Food and Drug Administration, and other key stakeholders. Researchers and clinicians from the United States, Europe, Japan, Singapore, and Australia gathered to discuss various methods for improving the diagnosis of Diabetic Retinal Disease (DRD), with an emphasis on visual function and the importance of listening to patient voices.
Establishing biomarkers and clinical endpoints for DRD is a critical component of the Mary Tyler Moore Vision Initiative’s efforts. Our goal is to develop new methods for early diagnosis, assess disease severity and risk, and predict the rate of progression and response to therapy.
The workshop identified knowledge gaps in the field and the participants will continue to work in a public-private consortium to develop new endpoints for research and clinical care of patients with this condition – all to serve the overarching purpose of the Mary Tyler Moore Vision Initiative — to accelerate the development of new methods to preserve and restore vision and create a world without vision loss from diabetes.
Our Agenda:
Visual Function Measurements in Eyes with Diabetic Retinopathy: An Expert Opinion on Available Measures
Ophthalmology Science (April 2024) published the Visual Function Working Group of the DRD Staging System Update, a project of the Mary Tyler Moore Vision Initiative, titled: “Visual Function Measurements in Eyes with Diabetic Retinopathy: An Expert Opinion on Available Measures.” An in-depth review that explores how to best measure visual function in people with diabetes and diabetic retinal disease. Authors included working group leaders Adam R. Glassman, MS and Mohamed Ashraf Elmasry, MD PhD FRCOphth, and members: Darrell E. Baskin, MD, Mitchell Brigell, PhD, Victor Chong, MD, Quentin Davis, PhD, Luis Lesmes, PhD, Leonard A. Levin, MD, PhD, Ted Maddess, PhD, FNAI, Laura J. Taylor, BSc(Hons), Andreas Wenzel, PhD.
Experts Stress Importance of Eye Health in Patients with Diabetes
The stories shared by JDRF staffers this month about their experiences with diabetic eye disease are sobering reminders that individuals with diabetes are at a lifelong risk of vision loss. This holds true despite recent advances in treatment and improvements in doctor and patient education. Currently, the best way to prevent vision threatening diabetic retinal disease is by controlling factors such as high blood sugar, high blood pressure and high cholesterol. We also emphasize the importance of routine dilated eye examinations performed at least annually. Nonetheless, we see patients on a weekly basis who, despite decades of careful monitoring of their blood sugars, a healthy diet, and routine exercise, develop advanced retinal complications like the ones described by Arielle, Grace, Liz, and Nate. Given the rising numbers of patients with T1D worldwide and the enormous burden that diabetic eye complications place on patients and their families, there is a tremendous unmet need for newer, more effective therapies and prevention strategies for diabetic eye disease.
The Mary Tyler Moore Vision Initiative (MTM Vision) is an international collaboration led by Dr. S. Robert Levine and inspired by his wife, the actress Mary Tyler Moore, who worked tirelessly to advocate for patients with T1D and who envisioned a world without vision loss from diabetes. The mission of MTM Vision is to acceleratethe development of new methods to preserve and restore vision in people with diabetes. This will be accomplished through major efforts already underway that include a redesign of the system used to describe the progression of diabetic eye disease, a biobank for eye tissue and fluid from deceased donors , and a collaboration between industry partners and researchers to develop new ways to measure visual function in the diabetic eye. Tools from these initial efforts will be used to improve the research and development process for new interventions that can help us preserve excellent vision in all eyes of people with T1D, and restore it in people who already have significant visual loss. As doctors and scientists, we recognize the importance of addressing the worldwide epidemic of diabetes and associated vision loss by developing therapies and preventions that effectively address early-stage disease even before vision is affected. As humans, we are motivated by the people we have known and loved who have suffered irreversible vision loss from diabetes. MTM Vision has gathered an internationally renowned group of physicians, scientists, and major industry groups to work together in solving this challenge. We are committed to keeping the patient voice front and center in this endeavor. Our purpose is to ensure that people with diabetes can live joyful and independent lives free from the fear and suffering of vision loss.
Jennifer Sun, MD, MPH is Associate Professor of Ophthalmology at Harvard Medical School, Chief of the Center for Eye Research and Trials at the Beetham Eye Institute, Joslin Diabetes Center, and Scientific Co-director of MTM Vision.
Thomas Gardner, MD, MS is Professor of Ophthalmology and Visual Sciences at the University of Michigan and Scientific Co-director of MTM Vision.
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