Mary Tyler Moore Vision Initiative

Adriana Plevniak

Adriana Plevniak, a member of our Lay Advisory Committee who has lived with type 1 diabetes for 36 years and navigating diabetic retinopathy for over a decade, opened the Symposium. She told us about her personal experience with DRD. She said: “Diabetic eye disease has taken so much from me, but today I stand here bleed-free, proof of what innovation and collaboration can achieve.”  She went on to say, “Mary spoke so eloquently about her experience with DRD. She expressed that diabetic eye disease had stolen dance—her joy—from her. Joy comes in many shapes and forms, and losing one of our senses dramatically changes how we experience the world and takes away some of our joy.”

Listen to more of Adriana’s story at the 16:00 mark below:

Team Spotlight: Kelli Ramos, MPH

Kelli has been instrumental in the progress and the development of the Mary Tyler Moore Vision Initiative Ocular Biorepository and Resource Center. Everyday, she brings her drive, her positive attitude and her impeccable organization to the service and the success of our team. These skills have been invaluable as Kelli is directly in charge of managing the daily communication and interactions with all the stakeholders of the project, while also involved in all other aspects of daily management – challenging to say the least, but seamlessly performed. – Patrice E. Fort, PhD

Kelli Ramos, MPH is the Senior Project Manager for the Mary Tyler Moore Vision Ocular Biorepository and Resource Center (MTM Vision-BRC) at the Kellogg Eye Center, here at the University of Michigan. In her role, Kelli oversees the hiring of technical staff, collaborates with contractors, and manages the collection, storage, and distribution of ocular tissues for scientific research. CDI recently had the pleasure to meet with Kelli to learn more about her and her work.


CDI: Can we start by asking, how did you arrive in your current role?
Kelli: When I came to my current role, the University of Michigan was still very much in a COVID state. I felt like I didn’t see anybody! The ocular biorepository was planned to be located in a lab on the older side of the Kellogg Eye Center. Patrice Fort, PhD, is the P.I. who worked in the biorepository space before I joined. Dr. Fort and his staff built a small ocular biorepository and from that work branched the larger ocular biorepository project our staff is working on now.

I was brought onto the project in 2022. At the time, the Mary Tyler Moore Vision Initiative Ocular Biorepository (MTM Vision-BRC) consisted of myself and Dr. Fort. Since that time, we have grown the staff to bring on two staff scientists. We also work closely with the MTM Vision Initiative and they have a big role in driving the project and their group truly connects us with the purpose: to end vision loss caused by diabetes. Working together helps to keep us all on track because we’re having conversations about how this work really impacts the diabetes community outside of just working with organs and tissues every day.

It has been a privilege to work with the project from the beginning and to see how it’s grown, and it has scaled up quite quickly in terms of organ procurement and sample quantities. We currently have 50 whole globe samples and over 2,000 ocular tissue, fluid, and blood samples that will be stored at the Central Biorepository on campus. 

CDI: What’s a typical day like for you in your role?
Kelli: As a project manager, I’m the liaison for a lot of different aspects of the project, both technical and nontechnical. One aspect I particularly enjoy is working with the lab staff on the planning and execution of scientific initiatives. I have a clinical laboratory background as well as a foundation in laboratory public policy, supporting the completion of our milestones is a large part of what drives my motivation.

In terms of my role and true project management, it involves looking at every branch of the project- from data platform to organ procurement. I work on new grant submissions and progress of existing grant funds. I am the point of contact for the eye banks and any new relationships we make with eye banks across the US. Growing the ocular biorepository has required support in areas of tissue storage and data management. One great thing about this project is as milestones are completed, new milestones are created and the growth is going in a very progressive direction which allows us to see this project continuing for many years to come. 

CDI: What gets you most excited about your work?
Kelli: At first, I think it was the lab work because I got to hire staff so I have those relationships that are the foundation of the project. Working with them to determine what’s next. Once we have these whole eyes, how do we store them? What’s the standardization? How do we make sure we’re being respectful to the organ donors and their families while keeping the samples safe? That was a primary role for me and will always be foundational and exciting. It’s my “why I go into the office”, for sure.

The other side is growing the project and enabling it to speak to these other projects which also collect organs from diabetic donors. That is the overall dream. That’s the resource center part of the biorepository. We want to take the different studies that are focused on analysis of different organs effected by diabetes and someday be able to use the data together to try and find a correlation.

CDI: What’s the most challenging aspect of your work or the project?
Kelli: Organ procurement. We’re working with a time schedule of 10 hours post-mortem at a maximum, and our goal is to collect tissues in under 6 hours. Establishing a protocol and getting on track with the scientific directors and organ procurement staff of each eye bank is challenging. The protocol is really particular.

Also tracking organs because we can say what we want, but it doesn’t mean that in real time, that’s going to play out exactly how we want. Different states have different regulatory procedures that can sometimes put us outside of our 10-hour timeline or cause the eyes to be redirected to different sources. Eye tissue is collected from postmortem organ donors. The process of collection can be unpredictable. Working with the procurement staff is another aspect of my position I find highly challenging and exciting.

CDI: Now that we have learned more about you professionally, we’d like to know what do you enjoy outside of work? What do you do in your downtime?
Kelli: My family, we’re big skiers. I have two kids, an 8-year-old and a 12-year-old. We’re skiing in the winter, and swimming in the summer. My daughter’s a competitive swimmer so we spend a lot of time at the pool.

CDI: What’s your favorite place to go skiing?
Kelli: We go to Crystal Mountain. My husband is from California, so we’re going to ski in Tahoe this coming holiday season.

CDI: Is there an accomplishment you’re most proud of? It could be, professionally or personally.
Kelli: I graduated with my master’s degree in Public Health this past May from Central Michigan University. This project contributed to the completion of my capstone.  CDI has also been very supportive of our work, I’m very happy for those relationships.
 

CDI: Many thanks Kelli for her time and allowing us a peek into her world. Enjoy your trip to Tahoe!

Boehringer Ingelheim and the Mary Tyler Moore Vision Initiative Join Forces in the Fight Against Vision Loss from Diabetes

Boehringer Ingelheim and the Mary Tyler Moore Vision Initiative join forces to combat vision loss from diabetes 

Ingelheim, Germany and Ann Arbor, MI, USA, November 12, 2024 –

  • More than 530 million people worldwide living with diabetes are at risk for developing diabetic retinal disease (DRD), the leading cause of blindness in working-age adults. 1
  • DRD is a growing epidemic that is expected to increase as the incidence of diabetes escalates across the globe.2,3
  • There is an urgent need for earlier detection of DRD and novel treatments that work in earlier disease states before vision loss occurs. 

Boehringer Ingelheim and the Mary Tyler Moore Vision Initiative (MTM Vision) today jointly announce the start of a long-term collaboration as Boehringer becomes the first pharmaceutical company to join the MTM Vision Consortium. Housed at the University of Michigan, the MTM Vision Consortium aims to unite innovators in the pre-competitive space from universities, foundations, as well as pharmaceutical and biotech companies. MTM Vision leads this international collaboration, motivated by the urgency of millions of people worldwide who have lost or are at risk of losing their eyesight as a consequence of diabetes.

The Consortium members share several goals: address the need for novel means to better diagnose and stage DRD; validate promising clinical trial endpoints and biomarkers; and accelerate the development of breakthrough therapies. These efforts will enable treatment earlier in disease before vision loss occurs, and contribute to the creation of new regulatory pathways for drug approval. 

“We are excited to join forces with MTM Vision in leading a new era of vision preservation and protection for people living with diabetes. This collaboration will help us enhance our understanding of the progression of diabetic retinopathy and the role of retinal non-perfusion, supporting the development of our portfolio in diabetic retinal diseases,” said Dr. Ulrike Graefe-Mody, Global Head of Retinal Health at Boehringer Ingelheim. “It also gives us access to a unique biospecimen bank, accelerating our research and biomarker identification. In return, we are openly sharing our current efforts for evidence generation to further understand DRD and support MTM Vision’s work. Together, we are setting a course to fundamentally change our understanding of vision loss from diabetes and how it is treated.”

“Here at our third Annual Global Symposium on curing vision loss from diabetes, which coincides with Diabetic Eye Disease Awareness Month, we are delighted to announce that Boehringer Ingelheim has joined us as a founding member of our MTM Vision Consortium,” said Dr. S. Robert Levine, founder and CEO of MTM Vision. “This Symposium provides a platform for the convening of global leaders dedicated to accelerating the development of innovative therapies to prevent and cure vision loss from diabetes. Boehringer Ingelheim’s commitment to our pre-competitive Consortium marks a pivotal moment along our path to ensure better patient outcomes by advancing research and sharing critical data. This will significantly strengthen our efforts to catalyze the development of new methods to diagnose and treat diabetic retinal disease earlier, which may preserve vision for millions of people at risk.”

For more information about the Mary Tyler Moore Vision Initiative visit MaryTylerMoore.org. For more information about Boehringer Ingelheim’s commitment to retinal health, please visit Boehringer-Ingelheim.com.

Notes to Editors:

About diabetic retinal disease

Diabetic retinal disease (DRD) includes all diabetes-related changes in the retina, including harm to retinal blood vessels (diabetic retinopathy or DR), swelling in the retina (diabetic macular edema or DME), restriction of blood supply to the macula (diabetic macular ischemia or DMI), and damage to retinal nerve cells that help us see (diabetic retinal neuropathy or DRN). 4,5  

About Boehringer Ingelheim

Boehringer Ingelheim is a biopharmaceutical company active in both human and animal health. As one of the industry’s top investors in research and development, the company focuses on developing innovative therapies that can improve and extend lives in areas of high unmet medical need. Independent since its foundation in 1885, Boehringer takes a long-term perspective, embedding sustainability along the entire value chain. More than 53,500 employees serve over 130 markets to build a healthier, more sustainable, and equitable tomorrow. Learn more at www.boehringeringelheim.com.

About the Mary Tyler Moore Vision Initiative and the MTM Vision Consortium

The Mary Tyler Moore Vision Initiative (MTM Vision) is a one-of-a-kind non-profit dedicated to accelerating the development of new therapies to preserve and restore vision in people with diabetes. MTM Vision was founded by Dr. S. Robert Levine to honor his wife, Mary Tyler Moore’s leadership in diabetes research advocacy. With a focus on fostering groundbreaking research and global collaboration among leading academic institutions, research advocacy groups, pharmaceutical and medical device companies, government agencies, tech firms, philanthropists, and leaders in the entertainment industry, MTM Vision stands at the forefront of the fight against diabetic retinal disease (DRD). In partnership with the University of Michigan (U-M) and the Joslin Diabetes Center, an affiliate of Harvard Medical School, and housed at the U-M Caswell Diabetes Institute and the U-M Kellogg Eye Center, MTM Vision has established the MTM Vision Consortium, a pre-competitive research initiative accelerating drug development for DRD. The Consortium offers members access to key resources like the MTM Vision Ocular Biorepository and Resource Center and the MTM Vision Clinical Endpoints and Disease Biomarkers Data Resource to support development of breakthrough therapies and FDA approvals.

Boehringer Ingelheim’s Intended Audiences Notice

This press release is issued from our Corporate Headquarters in Ingelheim, Germany and is intended to provide information about our global business. Please be aware that information relating to the approval status and labels of approved products may vary from country to country, and a country-specific press release on this topic may have been issued in the countries where we do business.

References

  1. Wong TY, Sabanayagam C. Ophthalmologica. 2020;243(1):9–20.
  2. Teo ZL, et al. Ophthalmology. 2021;128(11):1580-91.
  3. Causes of blindness and vision impairment in 2020 and trends over 30 years, and prevalence of avoidable blindness in relation to VISION 2020: the Right to Sight: an analysis for the Global Burden of Disease Study. Lancet Glob Health 2021 Feb;9(2):e144-e16.
  4. Michael D. Abramoff MD, et al. Investigative Ophthalmology & Visual Science. 2018;59:519–527. 
  5. Jennifer K. Sun, MD, MPH, et al.  Ophthalmology. 2020;128:490-3, 2021.

Media Contacts 

Boehringer Ingelheim: 

Linda Ruckel
Boehringer Ingelheim Corporate Center GmbH 
Innovation Unit/Bio Comms, Corp. Affairs 
Media + PR 
press@boehringer-ingelheim.com 
 

Mary Tyler Moore Vision Initiative:
  
Laura Bachrach
The Mary Tyler Moore Vision Initiative, Corporate Communications
lb@laurabachrach.com

Detroit Free Press Interview With Dr. S. Robert Levine

The Mary Tyler Moore Vision Initiative was featured in the Detroit Free Press highlighting our inception, Mary’s story of vision loss from diabetes and dedication to advocating for diabetes research, and our partnership with the University of Michigan’s Caswell Diabetes Institute and the U-M Kellogg Eye Center. Thank you to Carol Cain and The Detroit Free Press, for sharing Mary’s story and helping to spread the word about the Mary Tyler Moore Vision Initiative, dedicated to research to cure vision loss from diabetes.

To read the article, please visit the link here

“Diabetic Retinopathy in Youths – A Potential Unappreciated Public Health Catastrophe”

MTM Vision Co-Scientific Director Jennifer K. Sun, M.D., M.P.H., of the Department of Ophthalmology at Harvard Medical School and the Beetham Eye Institute at Joslin Diabetes Center, co-authored an article titled “Diabetic Retinopathy in Youths – A Potential Unappreciated Public Health Catastrophe,” recently published in JAMA Ophthalmology. Sun’s co-authors include Julie Rosenthal, M.D., M.S., from the Department of Ophthalmology and Visual Sciences at the W.K. Kellogg Eye Center, University of Michigan, and Risa M. Wolf, M.D., from the Division of Pediatric Endocrinology at Johns Hopkins University School of Medicine. The article highlights the concerning rise of diabetic retinopathy (DR) in youths, a condition traditionally considered rare in this population. Recent data from the SEARCH and TODAY studies revealed alarming rates of DR among youths with diabetes, with 52% of those with type 1 diabetes and up to 55% with youth-onset type 2 diabetes showing signs of the disease after a relatively short duration of 7.5 to 12 years.

Read Here.

Data Harmonization, Standardization, and Collaboration for Diabetic Retinal Disease (DRD) Research: Report From the 2024 Mary Tyler Moore Vision Initiative Workshop on Data

The report, “Data Harmonization, Standardization, and Collaboration for Diabetic Retinal Disease (DRD) Research: Report From the 2024 Mary Tyler Moore Vision Initiative (MTM Vision) Workshop on Data,” was recently published by TVST, an ARVO Journal. The “Workshop on Data” discussed best practices and specific considerations for building a comprehensive, shareable MTM Vision data lake by standardizing and harmonizing clinical data and ocular omics analyses. Standardization of data collection, common data elements, and data interoperability were emphasized alongside federated learning approaches to promote data sharing and collaboration while maintaining data privacy and security. Integrating molecular data with other multimodal data types was recognized as a promising strategy for leveraging machine learning, and AI approaches to advance therapeutics development and improve treatment outcomes for DRD patients. Partnerships with the National Eye Institute, part of the National Institutes of Health, foundations, and industry were deemed vital for successfully implementing these initiatives. The report was led by Amitha Domalpally, MD, PhD, with contributors including Ward Fickweiler, MD; S. Robert Levine, MD; Kerry E. Goetz; PhDc; Brian L. VanderBeek; MD, MPH, MSCE; Aaron Lee, MD; Jeffrey M. Sundstrom, MD, PhD; Dorene Markel, MS, MHSA; Jennifer K. Sun, MD, MPH.

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Nina Jolani

Nina Jolani has lived with diabetes for over 33 years and was diagnosed with diabetic retinal disease (DRD) in 2023. After her diagnosis, she moved closer to her family to ensure she would have a support system when it came to appointments, lasers, surgeries, and more. While she knew that DRD was a complication of diabetes, she never thought that it would happen to her. 

Nina has participated in several activities to support finding a cure for DRD, including speaking to a member of Congress about diabetes research funding.  Now, she feels ready to share her story and advocate for increased resources to combat DRD.

Liz Walsh

Meet Liz Walsh, a dedicated team member of our partner BreakthroughT1D (formerly JDRF). Liz’s journey with her eye health started six years ago when she noticed dark spots in her vision. A subsequent exam revealed severe damage, and since 2018, she’s courageously undergone five surgeries to repair a recurring detached retina in her left eye. While there are no guarantees for the future, Liz’s story is one of strength, resilience, and hope.

Through it all, Liz found moments of reflection, thinking about the things she loves—baking, photography, sports, taking her dog to the park, and memorizing the faces of her loved ones, all while embracing the uncertainty ahead. But despite the fear, Liz remains hopeful, fully supporting research efforts to preserve and restore vision loss from diabetes.

Her story is a reminder of how crucial it is to continue supporting research for diabetic retinal disease so that one day, people like Liz won’t have to worry about losing their vision from diabetes. Together, we can find a cure for DRD.

Grace Bennett

Grace Bennett, an employee at BreakThroughT1D (formerly JDRF), had always been fiercely independent, navigating the ups and downs of life with Type 1 Diabetes (T1D) that ultimately caused her to have Diabetic Retinal Disease (DRD). When she began experiencing complications with her vision as a result of DRD, everything changed. The fear was overwhelming—what would happen if she lost something as crucial as her eyesight? On top of the fear, there was the crushing weight of shame and isolation. Grace couldn’t shake the feeling that it was her fault, that maybe she’d done something wrong in managing her diabetes.


Her retinal specialist assured her it was not her fault, telling her that living with T1D for over 20 years—like in her case—very often leads to serious complications like kidney and heart disease as well as vision loss from DRD, even when you do all you can to manage blood sugars. At that moment, Grace felt a wave of relief. This understanding gave her the strength to focus on addressing the complication and moving forward. There’s still so much more work to be done. We must continue to support innovative research and develop new therapies to address the early stages of DRD and restore vision in people who have lost it due to diabetes. Together, we can find new ways to prevent and cure vision loss from diabetes

Arielle Cilaire

Arielle Cilaire is a staff member of our partner Breakthrough T1D (formerly JDRF).  Arielle’s journey with her eye health took an unexpected turn during the pandemic. After years of regular check-ups with an ophthalmologist, she went to a retinal specialist. Just a year after giving birth, she received shocking news: “You have diabetic retinal disease (DRD) in both eyes, stronger in your left.” Arielle had no previous signs and learned that pregnancy could accelerate DRD. The doctor emphasized that all people with T1D should see a retina specialist.

A year later, Arielle had to undergo invasive laser treatments, eye injections, and vitrectomy surgery, in efforts to save her vision. Having lived with diabetes for 32 years, Arielle’s vision-saving interventions reflect progress, but also how much work still needs to be done to offer hope of better ways to diagnose early, predict the risk of progression, and prevent vision-threatening DRD for everyone with diabetes.

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