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eye to eyeeye to eye newsnewsDecember 2023The Glaucoma Foundation | Page OneMessage FromThe PresidentDear Readers,During this holiday season, I want you to know how grateful we at TGF are for you and all of our friends and supporters who make TGF’s research and educaonal iniaves possible. You are vital to our work and deeply appreciated!We have just concluded our Fourth Annual TGF Art Challenge to Celebrate Vision and we are excited to announce that donaons exceeded our goal. With the addion of a matching gi, we raised $106,332 that will help fund glaucoma research in our next grant cycle. Thanks to the 29 arsts who parcipated and to their friends, families, colleagues and others who honored their arsc visions with contribuons. We were delighted that this year 10 glaucoma paents were among the parcipang arsts. You will read about one of them in this issue. This month our Scienc Advisory Board will be reviewing research grant applicaons, assessing which projects, including two donor directed grants, are ready for funding. -connued on back pageDOCTOR, I HAVE A QUESTIONMy glaucoma doctor uses dierent imaging devices during my eye exams. What does each of them do?Queson answered by:Gregory K. Harmon, MDBoard Chairman,The Glaucoma Foundaon Your eye doctor has a range of sophiscated tools to help diagnosis glaucoma and measure its progression. Since opc nerve damage cannot be reversed, detecng glaucoma and its progression as early as possible is key to keeping glaucoma under control and preserving sight.The opc nerve is composed of over one-million individual nerve bers. By imaging your opc nerve over me during mulple visits to your eye doctor, these machines can help monitor and detect loss of opc nerve bers. Your eye doctor may be using one of these opc nerve computer imaging techniques as part of your glaucoma examinaon.-connued on the next page

The Glaucoma Foundation | Page Twoeye to eye newseye to eye news• Glaucoma Diagnosis Analyzer (GDx)• Heidelberg Renal Tomography (HRT)• Opcal Coherence Tomography (OCT) The Nerve Fiber Analyzer (GDx) uses laser light to measure the thickness of the nerve ber layer. When thinning, this layer gives important clues to physicians about the presence of glaucoma.The Heidelberg Rena Tomograph (HRT) is a special laser that produces a three-dimensional high-resoluon image of the opc nerve. This test provides clinicians with measurements of nerve ber damage (or loss).Opcal Coherence Tomography (OCT) is currently the most popular technology used by glaucoma specialists for opc nerve ber analysis. OCT measures the reecon of laser light much like an ultrasound measures the reecon of sound. It can directly measure the thickness of the nerve ber layer and create a three-dimensional representaon. Research has shown that damage to the nerve ber layer and opc nerve oen occurs before visual eld changes are recognized. Aer glaucoma is diagnosed, scans taken over me may show progression of the disease and whether your treatment is working.For the OCT test, you sit in front of the OCT machine and rest your head on a support to posion your head correctly. You will be asked to look at a blinking target and the scans will be taken without the machine touching your eye.OCT is also used for imaging before cataract surgery to detect disease like macular degeneraon that might limit the success of cataract surgery in glaucomatous and non-glaucomatous paents. OCT technology, rst introduced in 1991, connues to advance. Arcial Intelligence may pave the road for cost-eecve glaucoma screening programs, such as detecng glaucoma from OCT images in an automated fashion.My glaucoma doctor uses dierent imaging devices during my eye exams. What does each of them do? continued from page 1

The Glaucoma Foundation | Page Threeeye to eye newseye to eye newsPREGNANCY AND GLAUCOMA It is important for women with glaucoma to work closely with their ophthalmologist and OB/GYN when thinking about having a family. By discussing plans to become pregnant, a concerted eort can be made to achieve intraocular pressure (IOP) control on minimal or no medicaons, minimizing risk to the fetus while safeguarding the eye. Each case has to be evaluated on an individual basis.Some paents are able to disconnue all glaucoma medicaons for the rst 12 weeks. In other cases, disconnuing glaucoma medicaons is not possible, for example, if a paent has substanal opc nerve damage or extremely elevated IOP levels and is not able to tolerate uncontrolled IOP even for a short period of me. In such cases, the physician would try to prescribe the fewest possible medicaons, thoughully selected and dosed to minimize risks to the fetus. The advent of several newer glaucoma medicaons (e.g. Vyzulta™ and Rhopressa™) with good safety proles is a posive factor for glaucoma paents who are considering pregnancy. Somemes surgery may be the best opon for paents who cannot achieve an acceptable IOP level with minimal or no glaucoma medicaons. If possible, surgical procedures to control IOP are best performed prior to conceiving so that the IOP level can be controlled and stable throughout the enre pregnancy. If necessary (SLT) Selecve laser trabeculoplasty can be performed during pregnancy. Incisional surgery, such as trabeculectomy, is safest prior to concepon. There are now a variety of FDA-approved minimally invasive surgeries (MIGS) that oer signicant advantages to the opons pregnant paents faced earlier. MIGS typically are performed through a small incision in the eye with minimal ssue trauma, thereby oering a safer alternave as well as a faster recovery period.There is no data suggesng problems with labor and delivery of a newborn. Periods of extreme straining during delivery may raise IOP, but this is very brief. Nursing must be considered as well, and warrants a discussion between the paent and her doctors as glaucoma medicaons may also be secreted into breast milk when nursing. Decisions on glaucoma treatments during the nursing period must be carefully considered. And nally, many mothers ask if their glaucoma puts their child at risk for developing the disease. Family history is a signicant risk factor. Once a child is old enough to sit sll for an eye examinaon, the child should get tested, and retested at periodic intervals. Be sure to let your child’s pediatrician know that you have glaucoma.

The Glaucoma Foundation | Page Foureye to eye newseye to eye newsLIVING WITH GLAUCOMAMeet Annie HessePhotographer Annie Hesse grew up in northern California and has lived in Paris since 1985. One of the 29 arsts who parcipated in this year’s Art Challenge, and one of 10 glaucoma paents to enter the challenge, Annie was born completely blind with congenital cataracts, which were removed at the age of three months, leaving both eyes permanently impaired. She was later diagnosed with glaucoma. “I did okay in school in Palo Alto,” she says. “I was oered blue-lined paper and books with large type but I refused all that because I didn’t want to appear dierent from the other kids. At least I could see – if only 20/200 in one eye and 20/800 in the other. Glasses really didn’t help much.”“Someone oered to teach me Braille, but I wasn’t interested because I thought, ’I can see, I can write.’ Then they introduced me to a typewriter with large leers – that really changed my life.” “Another turning point was when I was 12 and 13. My parents and older sister and I went to Europe and camped for an enre year. That opened my eyes to the world – I learned bits and pieces of languages and made friends along the way. I’m sure I wouldn’t be the person I am today if it wasn’t for that experience.” “I was diagnosed with glaucoma at age 14, nished high school and started to go to college in California but dropped out. That was in the ‘60s and I was acve against the wars in Southeast Asia. I met other adventurous spirited people; we did street theater up and down the West Coast for a number of years. I lived in a hippie van.” “There were lots of adventures. I hitchhiked with a partner across Europe and ended up in Cairo, Egypt and then hitchhiked all through Africa. That was another turning point in my life. I returned to California but In December, 1985 I moved to Paris to join a French partner I had met during my travels.”

The Glaucoma Foundation | Page Fiveeye to eye newseye to eye newsAnnie diligently took her glaucoma eyedrops for 30 years. But in the mid-1990s, her pressures started going up and she thought she was losing more vision. Nothing seemed to lower her eye pressure and the only other opon was the tradional trabeculectomy surgery. Unfortunately, there were negave consequences. “I lost vision in what was my beer eye. But ironically, this operaon was liberang in a way because it made me realize that for all these years I had been in denial of my disability because I wanted to look normal and be accepted as a normally-sighted person. Suddenly, it was like, ‘Oh, okay, I’ll use a cane, no problem, it tells people that I have this disability.’ “Photographing the cultural milieu around me in black & white was my inial inspiraon; the darkroom was magical. But aer the eye operaon in 1995, developing and prinng became too challenging and I migrated to digital photography. Eventually, my desire to show the viewer my percepon of the world and also to iniate another way of ‘seeing’ became vital.” “Color, shape, texture and contrast are the key elements in my photographs. My work has appeared in numerous group shows in the United States including the traveling exhibion, “Sight Unseen – Internaonal Photography by Blind Arsts,” which just had a showing at the Bedford Gallery in Walnut Creek, CA.” Annie’s advice to others: “Get on with your life and don’t let your vision loss stop you from doing what you want to do.” Annie recalls all the early devices that helped her, such as a monocular and the pocket magnier she wore on the belt loop of her jeans, even when she traveled across Africa. She gives a shout out to the SuperNova magnier and screenreader technology on her computer, and of course to the internet, because it opened a new world to her when she lost sight in 1995, and to the iPhone which has so many assisve funcons. More photos at anniehesse.com.TGF Names Two New Board MembersTwo disnguished glaucoma specialists have recently joined The Glaucoma Foundaon’s Board of Directors. John Berdahl, MD has performed more than 25,000 eye surgeries around the globe. He is also the founder of Equinox Ophthalmic, a developer of medical technology. Dr. Joseph Panarelli, who specializes in the treatment of glaucoma in adults and pediatric paents, pracces at NYU Langone where he is Director of Glaucoma Services and Professor in the Department of Ophthalmology at NYU’s Grossman School of Medicine. His research interests include development of surgical devices and techniques.

The Glaucoma Foundation | Page Sixeye to eye newseye to eye news5 Tips for Advocating for Yourself as a Glaucoma PatientDealing with glaucoma can be frustrang. It’s especially dicult to manage this condion when you feel like your doctors aren’t listening to you. That’s why you’ll need to learn how to be your own best advocate. Connecng with an organizaon like The Glaucoma Foundaon can help you learn these valuable skills. Furthermore, here’s how to stay on top of all of your medical paperwork, research your various treatment opons, and even seek out a second opinion when appropriate.Keep Track of Your PaperworkWhen you’re dealing with a medical condion, you do not want to lose any important documents. In order to keep up with your treatments, you’ll have to get in touch with your healthcare providers on schedule so that you can book appointments without delay. If you’re seeing your doctor, ensure that you obtain copies of any crucial records and forward them to other specialists you’re working with.Should you need to share les with your doctor, it’s a good idea to send copies of PDF documents rather than Microso Word, Excel, or PowerPoint les. If you have documents in any of these le formats, you can convert them to PDFs by using a drag-and-drop tool – just click here for more info.Read Your Insurance CoverageDo you ever get confused while looking over your health insurance policy? Unfortunately, you’re not alone – comprehending what your insurance actually covers isn’t always clear. If you have quesons about your coverage for dierent glaucoma medicaons and treatments, you may want to call your insurance company to speak with a representave. You can ask them any quesons you may have and get claricaon about your coverage.Understand Your Treatment Opons If you were unfamiliar with glaucoma before receiving a diagnosis, you might feel like you have a lot to learn about this condion. Take the me to ask your doctor any quesons that may come to mind. Furthermore, remember that if a parcular treatment protocol isn’t working for you, it’s okay to ask about alternaves. You might want to spend some me looking up recent medical research and talking to your doctor about new opons that seem promising.

The Glaucoma Foundation | Page Seveneye to eye newseye to eye newsBring a Trusted Relave or FriendSomemes, going to appointments by yourself can feel overwhelming. You might not always understand your doctor’s explanaons, or you might feel frustrated by your poor vision. Bringing one of your loved ones with you can help you make it through appointments with your head held high. Health in 360 states that a friend or family member can decipher complex informaon for you, and you can even ask your doctor if it would be okay to record the conversaon so that you can listen to it again later for reference.Ask for a Second OpinionWhat if you’re not sased with your doctor’s explanaon for a parcular symptom, or you’ve been frustrated with their treatment recommendaons so far? If these scenarios sound familiar, you may want to start looking for a second opinion. MediFind states that geng a second opinion can be important because millions of adults are misdiagnosed by their doctors every year – and even if you’ve received the correct diagnosis, you’ll learn more about your opons for treatment, including choices that your original doctor might not have suggested.Life with glaucoma isn’t easy. But if you understand how to advocate for your needs in healthcare sengs, you can drascally improve your quality of life. With these ps, you’ll be able to manage your medical paperwork, learn more about your various treatment opons, and enjoy the benets of having a trusted loved one with you at appointments. (Camille Johnson for TGF)

In our next newsleer, we will tell you about the new grant recipients, including ve new minority Fellows, and the science we will be supporng in 2024.2024 will be a milestone year for The Glaucoma Foundaon as we will be celebrang the 40th anniversary of TGF’s founding. We’ve already begun planning a gala event for April 18th to mark the occasion. We will be honoring two of the Foundaon’s longest-serving board members and their spouses for their extraordinary dedicaon and philanthropy.For now, we wish you and your families a very happy and healthy holiday season.Sincerely, Elena Sturman We hope you nd this newsleer issue of interest and informave. If you’d like to suggest an arcle for the future, or if you’d like to share your story, please let us know. info@glaucomafoundaon.orgThe Glaucoma Foundation | Page Eighteye to eye newseye to eye newsPRESIDENT’S MESSAGEconnued from page 1