Mary Tyler Moore Vision Initiative
Mary Tyler Moore Vision Initiative and Variety Partner for Award and ‘Be A Mary’ Campaign
Variety launches “Be A Mary” campaign in partnership with the Mary Tyler Moore Vision Initiative
The Mary Tyler Moore Vision Initiative (MTM Vision) has partnered with Variety to establish an annual award named in honor of the legendary actor that will recognize groundbreaking achievements in storytelling.
The Mary Tyler Moore Visionary Award will honor the life and legacy of pioneering star of “The Mary Tyler Moore Show,” “Ordinary People” and “The Dick Van Dyke Show” who was also a tireless advocate for diabetes research and a philanthropist. In tandem with the award, Variety and MTM Vision will launch the promotional campaign “Be A Mary,” emphasizing the generosity, kindness, compassion, resilience and risk-taking that defined Moore’s life.
Ryan Barunas
Ryan has lived with diabetes for over 34 years, has experienced vision loss from the disease, and even had a partial detachment of his left retina following scatter laser therapy. Ryan spoke about his vision loss from diabetes, “As a young person with hopes and aspirations, this was terrifying.” He had eye surgery that was deemed successful—until two years later when he went back to his retina specialist and realized his right eye was deteriorating.
Ryan states, “Thanks to my skilled surgeon, a support network, including my family, my wife, and close friends, I came through on the other side with my vision, again, mostly intact.” Ryan believes that, due to MTM Vision’s passion and commitment to research to prevent vision loss and blindness from diabetes, we will bring better future outcomes for patients like himself.
Fall 2023 Workshop
The Mary Tyler Moore Vision Initiative held its second annual global Workshop, “Advancing Development of New Indications, Therapies, and Regulatory Pathways for Diabetic Retinal Disease,” on World Diabetes Day, November 14, 2023. Over 100 specialists from around the world gathered to delve into the intricacies of Diabetic Retinal Disease (DRD), contributing their expertise towards our mission of preserving and restoring vision for millions of people affected by the disease.
The Workshop was hosted by the Caswell Diabetes Institute and Kellogg Eye Center, both at the University of Michigan. It addressed critical scientific breakthroughs and advancements, fostering interdisciplinary collaboration among worldwide research experts in academia, pharma and device companies and government agencies, who came together to further accelerate the development of new indications, therapies, and regulatory pathways for DRD, and work together to prevent and cure the disease.
Partners and Sponsors
The Workshop was sponsored by Anida Pharma, Adaptive Sensory Technology, Bayer, Boehringer-Ingelheim, LKC Technologies, Ocular Therapeutix, OcuTerra Therapeutics, Optos, ONL Therapeutics, Perfuse Therapeutics, Regeneron Pharmaceuticals, Roche/Genentech and Visiontree. We are grateful to our participants, sponsors and partners: The Mary Tyler Moore and S. Robert Levine, MD Charitable Foundation, Caswell Diabetes Institute, Kellogg Eye Center, JDRF and the Entertainment Industry Foundation (EIF). We’d also like to thank the diabetes patients and family advocates for their support and contributions to the Workshop.
Panel discussions included:
Clinical Studies on Useful Endpoints and Biomarkers for DRD
Michael F. Chiang, MD | Director, National Eye Institute and Jennifer Sun, MD, MPH | Science Co-Director, MTM Vision along with a panel of experts, explored the pivotal role of data standardization and the necessity for new clinical trial endpoints.
Ocular Biorepository and Resource Center
Patrice Fort, PhD, MS | Director, MTM Vision Biorepository & Resource Center and Mark Atkinson, PhD | Director, nPOD & Diabetes Institute, University of Florida provided insights into the progress of the biorepository, highlighting the establishment of a facility at the University of Michigan’s Caswell Diabetes Institute and Kellogg Eye Center to understand DRD and identify new therapeutic targets.
Regulatory Pathways in Neurodegenerative Ocular Disease
S. Robert Levine, MD | Chair, MTM Vision and Wiley A. Chambers, MD | Director of the Division of Ophthalmology, Office of Specialty Medicine, Office of New Drugs, Center for Drug Evaluation and Research at the Food and Drug Administration (FDA)engaged in a dialogue on regulatory pathways in ocular disease. Dr. Levine stressed the need for examining interventions in the earlier stages of DRD, while Dr. Chambers emphasized the importance of well-defined and reliable assessments, including risk assessment and consideration of quality-of-life outcomes.
Hot Topics
Drs. Stela Vujosevic, MD, PhD, FEBO | San Giuseppe Hospital, IRCCS MultiMedica, Risa Wolf, Director, Pediatric Diabetes Program, Johns Hopkins University School of Medicine and Paolo Silva delved into Patient-Reported Outcomes (PROs), youth with diabetes, and the integration of telemedicine and AI in DRD, emphasizing the need for improved therapeutic options.
Risa M. Wolf, MD | Director, Pediatric Diabetes Program, Johns Hopkins University School of Medicine highlighted a rising prevalence of diabetic retinal disease in youth with type 1 and type 2 diabetes. In a 10-year longitudinal study with 404 participants, 50% developed diabetic retinopathy or clinically significant macular edema.
According to Paolo Silva, MD | Assistant Chief of Telemedicine, Joslin Diabetes Center, Beetham Eye Institute, Harvard Medical School the primary obstacle to telemedicine is the persistence of ungradable or low-quality images. Improving image acquisition enhances the success rate of images, thereby improving care for both providers and patients.
MTM Vision Awareness, Fund Development and Media
The panel addressed what can be done in the entertainment industry to increase awareness of DRD and help raise funds for DRD research. Panelists: Eric Carlson Founder of The Carlson Company, Social Impact & Media, Award Winning Documentary and Film Producer, Brian Gott | Chief Innovation Officer and Head of Industry Relations and Media EIF, Nicole Sexton | President & CEO, EIF, and Monica Oxenreiter | VP of Content, Close Concerns.
Measuring Quality of Life in Diabetic Retinal Disease: A Narrative Review of Available Patient-Reported Outcome Measures.
Ophthalmology Science (August 2023) published an MTM Vision Working Group paper titled “Measuring Quality of Life in Diabetic Retinal Disease: A Narrative Review of Available Patient-Reported Outcome Measures.” The review explores various patient-reported outcome measures to evaluate health-related quality of life in patients with diabetic retinal disease (DRD). It emphasizes the importance of understanding the psychometric properties of PROMs to determine their relevance to the severity levels of a revised DRD staging system. The review evaluates generic, vision-specific, and DRD-specific PROMs utilized in DRD research and identifies areas where enhancements could be made. The lead author is Stela Vujosevic, MD, PhD et al. This narrative review was undertaken by the MTM Vision Quality of Life working group, one of six working groups organized for the DRD Staging System Update Effort, a project of MTM Vision and JDRF supported by The Mary Tyler Moore and S. Robert Levine, MD Charitable Foundation.
Being Mary Tyler Moore
Critics Choice Award and Emmy Nominee for Outstanding Documentary Or Nonfiction Special
With unprecedented access to Mary Tyler Moore’s vast archive, “Being Mary Tyler Moore” chronicles the screen icon whose storied career spanned 60 years. Weaving Mary’s narrative with the beats of her professional accomplishments, the film highlights her groundbreaking roles and her indelible impact on generations of women who came after her. Mary’s career broke boundaries in different eras, most notably in her comedic roles as Laura Petrie in the 60s sitcom, “The Dick Van Dyke Show” and as a single career woman. Mary Richards on “The Mary Tyler Moore Show” in the ’70s, both of which put her at the forefront of female representation on television and cemented her as a role model for independent working women. Acknowledging that much of herself was woven into her sunny characters, she nevertheless struggled behind the scenes, dealing privately with immeasurable tragedy in her personal life. Some of this tragedy was echoed in her portrayal of a grieving mother in the 1980 film “Ordinary People”, for which she was nominated for an Academy Award.
In the last thirty-five years of her life, Mary went through a transformative period of self-discovery, moving to New York City, finding true love, and becoming an impactful global advocate for diabetes research. The film documents the life of a complex artist who shifted the dynamics of how women were portrayed on television, had far-reaching influence on the business through her own production company, and helped affect significant change through her work as International Chairman of the Juvenile Diabetes Research Foundation.
From producers Lena Waithe and Debra Martin Chase, director James Adolphus and executive producer Dr. S. Robert Levine, “Being Mary Tyler Moore” is the definitive feature documentary that explores Mary’s life and vanguard career.
Now available on Max
Official Movie Trailer
Being Mary Tyler Moore, an HBO Original documentary, examines the extraordinary life, career, and legacy of the actress and activist. The film was directed by James Adolphus with Lena Waithe and Debra Martin Chase as producers and Dr. S. Robert Levine as executive producer.
Lena Waithe Interview at SXSW
Lena Waithe and the filmmakers behind the documentary ‘Being Mary Tyler Moore,’ director James Adolphus, producer Debra Martin Chase and Mary’s husband Dr. S. Robert Levine, share why they each wanted to tell the story about the TV icon and how Mary impacted them.
Press Coverage
Sotheby’s Presents: The Collection of Mary Tyler Moore
Sotheby’s offered jewelry from the collection of Mary Tyler Moore as part of their Magnificent Jewels and Fine Jewels auctions in New York in December. Proceeds from the 21 pieces benefited The Mary Tyler Moore Vision Initiative, a non-profit organization that seeks to preserve and restore vision in people with diabetes, and continues Mary’s vital work as it honors her legacy.
A New Approach to Staging Diabetic Retinal Disease.
Ophthalmology Science (October 2023) published a Mary Tyler Moore Vision Initiative Working Group paper titled “A New Approach to Staging Diabetic Retinal Disease.” This review provides an overview of the existing evidence regarding biomarkers for measuring diabetic retinal disease (DRD), specifically diabetic retinal neurodegeneration and diabetic macular edema. Despite significant progress in retinal diagnostics, particularly in data collection from diabetic patients, the staging of DRD remains reliant on traditional color fundus photographs. There is a lack of clear guidelines on integrating data from newer diagnostic modalities into clinical practice. The lead author is Roomasa Channa, MD, and Michael Abramoff, MD, PhD, on behalf of the Diabetic Retinal Neurodegeneration and Macular Edema working group of MTM Vision and JDRF’s DRD Staging Update Project.
Sydney Colville
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 of 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.” The review 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.
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