2021 SEPTEMBER : simplebooklet.com

Newsletter September, 2021MESSAGE FROM THE PRESIDENTDear Readers,Research has always been the mainstay of the Foundation’s mission, and it remains center stage. Today we are delighted to announce two new named research grants. The rst, made possible by the generous support of TGF Board member Kumar Mahadeva, is funding a major research project now underway in the lab of Dr. Adriana Di Polo at the University of Montreal. She is undertaking a highly innovative study using state-of-the-art imaging technology that will break ground for the implementation of strategies to rescue neurovascular health and support vision restoration in glaucoma. You can read more about it below. And most recently, a gift from Ann Sloane will be used to establish the Harriet and Stanley Sloane Grant for Exfoliation Glaucoma Research, in memory of her parents. This grant will be awarded to a leading research team in the fall.As summer nears its end, only one week remains in our 2nd Annual TGF Art Challenge to Celebrate Vision. But there is still time to participate. Through September 15th, a generous donor will match your contribution. And remember -- every gift supports the most promising new glaucoma research. Our participating artists are amateurs and professionals of all ages. Each is sharing a vision and asking you to bring it into focus with your gift.We are busy planning for the months ahead. You’ll be receiving an invitation soon for our next webinar, a discussion about new trends in glaucoma procedures with Dr. Jerey Liebmann. Stay tuned.And as always, thank you so much for your generous support of all we strive to accomplish. We are most grateful. Best regards, Elena Sturman

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LIVING WITH GLAUCOMAMeet Edward and Carole Darden-LloydEdward Lloyd served for 18 years as the Chief Operating Ocer and Chief Financial Ocer of the U.S. Fund for UNICEF.Among his accomplishments that give him the greatest pleasure was the creation, at the end of his tenure, of the Bridge Fund, which continues to provide grants and low market loans quickly for emergency relief, such as vaccines for maternal and natal care. Ed was diagnosed with glaucoma in 2013, when he took his mother to check out her glaucoma and discovered that he had it too.“Over the years, my glaucoma has been under control,” he says, “but as of late the visual eld tests have indicated that I’m losing some peripheral vision in my right eye. I’m on a couple of eye drops, have had cataract surgery and another procedure, and I try to do the things that put me in a positive position to manage my glaucoma. “That’s where I am right now. I still do what I did, but I don’t do it as well. I still drive, but I’m cautious, and I exercise pretty regularly, but can’t always see the ight of the ball when I play golf. So it hasn’t stopped me from doing anything but it’s just worrisome.” Ed’s wife, Carole, a new Foundation Board Member, is a former social worker and child therapist, author and entrepreneur. Ed says that in the opinion of many, Carole was one of the best child therapists in the business, dealing with very ill, emotionally disturbed boys. “Through the years, I have been someone who has supported any health concerns my husband had,” she says. “Glaucoma became foremost because Ed’s mother, toward the end of her life, was legally blind. We were both very aware of the potential impact but I was very relaxed about his developing glaucoma because it was caught earlier and he had access to the best care.”Ed tells more about his family history. “My mother had glaucoma, my brother has glaucoma, and one of the reasons Carole and I had always supported The Glaucoma Foundation in a small way was the fact that more African American people have glaucoma than people recognize or seem to concern themselves about. My grandfather was blind and I suspect that he wasn’t blind because of some accident according to family lore, but rather because he had glaucoma. And he did not know, because nobody kept records of black people in the South and he wasn’t seeing any doctor. So that spurred on our original support.”

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Newsletter September, 2021Carole continues. “I lost my comfort level when Ed began to complain about things that were bothering him and his sense of increased limitations, and most importantly, his fear that he would suer his mother’s fate. She was a very independent woman, and she lived until the age of 88, but at the end of her life for at least 5 years, she was legally blind. “After she died, we continued to donate - to causes like glaucoma that aect our family and friends directly. And because we had been giving, we started getting literature from the Foundation and I would always read the newsletters. Then we started getting emails about webinars. So I said to Ed, ‘we are signing up for this webinar’. And that’s when my involvement with the Foundation really began. “We attended the webinar about Bringing the Latest Glaucoma Science Directly to the Patient. And in response to that, I sent a letter saying that it had really changed our attitude, how helpful it had been, how much we appreciated it, and that we would be following. “Elena Sturman called the next day. We were shocked at such a quick response and we were stunned when she asked both of us to join the Board. That wasn’t something that had crossed our minds. That’s how it began – serendipitously, with a letter. Both of us considered joining the Board, but Ed felt he was too busy with Board work he already was doing.“Because it was glaucoma, I really wanted to be on the inside rather than on the outside. I am not there for my glaucoma expertise. The experts are there. I want to be next to that and to be as helpful as I can be in terms of a person who is a caregiver and shares the worries of the person sleeping beside me. I plan to be a questioning Board member from the point of view of the caregiver.” UN Adopts First-Ever Resolution on VisionThe United Nations General Assembly recently unanimously adopted the rst-ever resolution on vision, committing its 193 Member States to ensuring eye care for everyone by 2030.Called “Vision for Everyone,” this landmark resolution aims to achieve global access to eye care through dedicated global eorts to help at least 1.1 billion people who have vision impairment and who currently lack access to the eye care services they need.The Assembly further called on Member States and other stakeholders to include persons with disabilities, including those with visual impairments, in all stages of policymaking and decision-making to eliminate barriers and discrimination against persons with disabilities.

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Uncovering Potential Therapeutic Targets for GlaucomaTGF’s new Kumar Mahadeva Research Grant was recently awarded to Dr. Adriana Di Polo, whose lab at the University of Montreal focuses on the pathology of retinal ganglion cells (RGC), the neurons that die in glaucoma. RGCs are metabolically active and require a precise regulation of blood supply to meet their high oxygen and nutrient demand. The vascular theory of glaucoma proposes that insucient blood ow contributes to RGC neurodegeneration. Glaucoma patients suer from vascular defects, but the cellular mechanisms underlying vascular dysfunction in glaucoma and their impact are currently unknown.Pericytes, the ensheathing cells that wrap around capillary walls, have emerged as key regulators of microcirculatory blood ow and neurovascular coupling. The retinal microvasculature is rich in pericytes. Di Polo’s lab recently reported that inter-pericyte tunneling nanotubes (IP-TNTs), ne tubular processes that connect retinal pericytes on distal capillary systems, are essential for vascular coupling in the retina. But the role of pericytes and IP-TNTs in vascular dysregulation in glaucoma has not been investigated until now.To ll this gap, Di Polo’s lab recently developed a novel laser scanning microscopy technique to visualize retinal pericytes and capillary blood ow in living mice. Their data support their hypothesis that pericytes play a critical role in early microvascular decits and neurovascular dysfunction in glaucoma. The newly funded project aims to identify the cellular and molecular mechanisms of pericyte dysfunction during ocular hypertension. Its ultimate goal is to characterize and validate therapeutic targets to rescue neurovascular health and restore vision in glaucoma.A Patient/Physician Fireside ChatTGF recently sponsored a Fireside Chat with guests Mark Lesselroth and Dr. George Spaeth. Dr. Spaeth, an internationally renowned glaucoma specialist, is Director Emeritus of the Glaucoma Service at the Wills Eye Hospital in Philadelphia. Mark Lesselroth, President and CEO of BioPortUSA, is a glaucoma patient and patient advocate, and a member of the Patient Care Committee of the American Glaucoma Society.Their conversation can be heard in its entirety on the TGF website. Here are a few excerpts.Regarding the Doctor/Patient RelationshipML: A doctor must give the patient enough time. That’s the basis of the relationship. Sometimes, doctors are so busy that it’s almost like an assembly line. When a doctor has to see 40, 60 or 90 patients a day, that just isn’t enough time and that’s an issue… They are trying to do their best, but we need more people. One thing is forming support groups so we can help one another. Unfortunately, I don’t see an ideal solution any time in the foreseeable future unless the eld broadens with more ophthalmologists, glaucoma specialists in particular.

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Newsletter September, 2021GS: One suggestion for the patient: write down everything that’s important for you to know on a little note card (e.g. this is what I need to know…this is what I’m worried about) and take it with you to your doctor’s oce every time you go. It forces you to think, it saves time for the doctor, and you’ll be more likely to have your questions answered.About Patient ComplianceML: It’s important that patients religiously take their medicines. Drs and their sta have to emphasize how important that is, that it really does make a dierence. GS: But when a patient is diagnosed and starts taking drops, and the vision gets blurry from the drops, the patient doesn’t think it’s making anything better, in fact, thinks this drop is just making me worse. One year later, we nd that only 11 percent are using their drops properly. It’s tragic and it comes from the hope that the doctor will take care of you – no, you need to take care of yourself.ML: I just think that as patients, we look for some semblance of reassuranceGS: Engaging the patient in a way that the patient can be meaningfully responsible is enormously important. One of the best ways to have that happen is for the patient to say, ‘I don’t understand that – tell me more.’ And stay right there until the doctor answers you…Doctors forget that every patient is unique with a unique situation. VIEW HERE

2021 SEPTEMBER

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