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NORTHAMPTON, Ma., Dec. 19, 2023 — The American Macular Degeneration Foundation received news that the first patient has been dosed in a safety and efficacy clinical trial of a one-time gene therapy treatment for advanced dry macular degeneration (dry AMD), also known as Geographic Atrophy (GA).
What’s exciting about this trial is that, if successful, OCU410 is a “potential one-time treatment for life,” said Dr. Shankar Musunuri, Chairman, CEO and Co-Founder of Ocugen, Inc.
In other words, curative.
How Does OCU410 Work?
The development of OCU410 is based on the AMDF-supported research of Dr. Neena Haider. It is designed to prevent or halt AMD progression, and possibly to restore some vision if retinal cells are not damaged beyond recovery. OCU410 is a potential curative therapy, administered with a single sub-retinal injection, that modulates hundreds of genes and multiple pathways that are involved in dry AMD, including lipid metabolism, inflammation, oxidative stress, and complement activation.
Currently available therapeutic options target only complement activation and require monthly or bi-monthly intravitreal injections.
What to Expect Next
While this news is very exciting, there are still several tests and steps before a treatment like this could be available to patients as a treatment option. Not all potential treatments that enter into clinical trials prove safe enough or effective enough to pass FDA approval. But we’ll be keeping an eye on this.
In the meantime, this news is all the more reason to make AMD-healthy lifestyle choices to help preserve your vision while curative therapies are on their way!
“The fact that we are testing this game changing gene therapy in a human being is testament to the focused effort of my lab in identifying and developing a therapy that has a strong, broad impact. The National Eye Institute supported my early career as I sought to demonstrate this radically different approach to gene therapy. Our preclinical AMD work that informed these clinical trials was accomplished with combined support from Ocugen and the American Macular Degeneration Foundation (AMDF),” said Dr. Haider. “The AMDF has provided the sustained support needed at many critical junctures in this journey, which was essential in creatively developing innovative solutions for this common and debilitating form of vision loss, and at times was crucial in keeping the lab open. Ocugen is now spearheading the clinical trials necessary to bring this therapy closer to patients. Successful outcomes will provide tremendous hope and help to those whose vision is already deteriorating, and will prevent others from developing this debilitating condition. ”
About Dry Macular Degeneration and Geographic Atrophy
Dry AMD involves the slow deterioration of the retina with sub-macular drusen (small white or yellow dots on the retina), atrophy, loss of macular function and central vision impairment. Dry AMD accounts for 85-90% of the total AMD population.
Geographic Atrophy is an advanced form of dry age-related macular degeneration characterized by dead spots near and on the macula, affecting approximately 1 million people in the United States alone with vision loss.
The holidays—a time of joy, togetherness, and yes, indulgence. Families bond together over food in all kinds of ways…around the holiday table, with food and beverage gifts, and in indulging in sweets and treats that are in abundance this time of year.
A Word on Indulgence
We all indulge! Sometimes we indulge because it feels good emotionally.
Sometimes we indulge because holiday foods are in abundance.
Sometimes we indulge because the holidays bring more stress than bonding.
We can’t tell you what to eat. You may have other health considerations. But from a nutritionist’s perspective, indulgence in moderation has its own benefits if you’re indulging for the right reasons.
My grandmother made a habit of indulging in “bites”. She would ask for a sliver of pie. And then, “oh, perhaps one more sliver”.
Our Favorite 2023 Gift Ideas for People with Vision Loss from Age-Related Macular Degeneration
It’s the gift-giving season again. If you have a friend or loved one with vision loss from macular degeneration, you may wonder what kind of gifts could be both meaningful and useful.
Vision loss impacts multiple aspects of life, including independence, mood, social connections, and even cognitive function. With the right adaptations and support, individuals can continue to thrive despite the visual impairments caused by age-related macular degeneration.
Our curated selection of gifts honors the unique needs of people with AMD while ensuring they are fun, innovative, unique, and inspiring.
*Disclosure: Some links below are affiliate links. When you purchase a product through one of these links, Amazon will share a small commission with AMDF. In other words, your Amazon purchases will benefit AMDF and the community we serve at no extra cost to you! We only share products we believe to be of benefit to people with vision loss from macular degeneration.
Stocking Stuffers for Macular Degeneration
These stocking stuffers are small and low-cost, but can have a big impact on daily living for people with vision loss from macular degeneration.
Key light
The Lucky Line LED Thumb Light sticks on to any key you choose, or a screwdriver, or tape measure, or anywhere you need a little extra directed light, and activates with a button press. Extra light is a one of the key “helpers” for people with AMD.
Why we like it: We found out about this tool from an AMD patient we know, who says it’s one of the most useful tools she has. The bonus of this key light is that it also serves as a tactile marker for a house key.
Bump dots are a simple home modification tool that can be applied to appliances, outlets, packaging, etc to help guide someone with low vision. For example, in this photo, a bump dot is stuck on underneath the “smoothie” button to help identify the button without trying to read small print.
Why we like it: We learned about bump dots while filming the breakfast episode of Eat Right for Your Sight, from Low Vision Occupational Therapist Beth Daisy. You can point your loved one to that video, or this one to learn more about how to use bump dots, and what low vision services provide.
Where to get it: You can buy on Amazon here, or check with your local low vision centers.
Low Vision Playing Cards
One of the most important things for people experiencing vision loss from macular degeneration is to maintain a sense of connection to others. Loss of independence and mobility can lead to isolation, loneliness, and depression. A simple pack of large print playing cards is a great tool to facilitate and invite someone with AMD “back to the table”. Make it extra special by scheduling a regular card night for you and your loved one with AMD.
Why we like it: Because everyone has a favorite card game. This large print version makes playing cards accessible for people with low to moderate vision loss from AMD.
The three rules for optimizing vision for people with vision loss from macular degeneration are Bigger, Bolder, and Brighter. These are achieved through magnification, increasing contrast, and light. These 2023 picks are useful tools for people with AMD.
Cordless LED Lamp
This nifty cordless LED lamp allows someone with vision loss from macular degeneration to bring the light to where they need it, whether that’s beside a chair for reading, or on the kitchen counter to bring light to a cooking task, or on a table or desk to increase illumination on a writing task.
Why we like it: Modifying an entire home to increase light for all work spaces can be an expensive endeavor. A cordless LED lamp can easily be transported to where extra light is needed.
Like the portable lamp option above, magnification is also useful when it’s portable. And what’s more portable than pocket-sized? This magnifier will likely not meet all your loved one’s magnification needs, but it will help out in a pinch.
Why we like it: While not the most powerful magnifier on the market, this one has an elegant pull-out design that allows for easy control of the light, and compact protection when not in use.
Yellow filters increase contrast for people with low vision from macular degeneration. This improves ability to read, visual acuity in low light or variable light conditions, and for those who are still able to drive, can improve contrast and clarity for night driving.
Why we like it: Many people still don’t know that wearing filters can improve visual acuity for eye conditions. We want to normalize these powerful and accessible tools!
Where to get it: Cocoons eyewear offers some of the best low vision filters on the market, and are therefore carried by many opticians. The best option is for someone with AMD to work with their eye care specialist or a low vision therapist. A less expensive option can be found on Amazon here.
Tech Gifts for Macular Degeneration
If your loved one is open, or even enthusiastic about high-tech options for their home, these gifts from Amazon’s device line all “play well” together and come with low vision and accessibility features built-in!
Amazon Echo Show
Amazon now carries a range of Echo devices, from a basic Echo Dot all the way up to a 15″ Echo Show. What you may not know, is that Amazon has been quietly building accessibility into their core devices, including for low vision. Read more about it here for inspiration. But to start, we recommend the Echo Show, which, like the Echo Dot, is an interactive speaker that can answer questions, play music, set timers, report on the weather, connect to other smart home devices, and more, but can ALSO includes a “show and tell” feature that helps people with low vision identify items with labels they can’t read. This feature was actually developed based on feedback from the low vision and blind community!
Why we like it: When set up in the kitchen, the Echo Show can become a powerful low vision assistant for cooking and organizing the kitchen.
Just like the Echo Show, Amazon has taken low vision into consideration with the Amazon Kindle E-Reader. Built-in accessibility features allow the user to adjust font-size, brightness, and contrast, and even use text-to-speech to listen to their book. Even if your loved one still loves physical books, if they are beginning to struggle to read, the Kindle can be a great supplement for books that aren’t available in large print. You can read more about Kindle accessibility here.
Why we like it: A high-tech solution with great usability. But mostly we like it because we’re all readers at AMDF, and really appreciate the low vision accessibility built-in.
While the Amazon Kindle has a text-to-speech feature to read books, Audible features audio books read by professional readers, or sometimes the authors themselves. It can be paired with Kindle, OR, can be downloaded and accessed from any computer or smart device. Audible is great for your loved one who likes to listen to something while engaging in a favorite hobby.
Why we like it: Audible is a great alternative to keeping the TV on for “company”. We also love the vast library of options in every genre, and the recent addition of podcasts.
Sometimes you just want something a little more unique, a little more special, or something with a little more meaning to give as a gift.
Donation in Their Honor and the AMD Awareness Pin
For the giftee who already has everything, a donation to macular degeneration research, education, and awareness in their honor can be lovely. Available with any level of donation to The American Macular Degeneration Foundation, the elegantly designed AMD Awareness Pin was created as a wearable art piece to raise awareness about macular degeneration by sparking conversation. ***Please NOTE: the pin will likely not arrive by Christmas, but you can creatively tell them it’s on its way in a card, along with the amount you donated in their name.
Why we like it: Well, we’re biased of course. It’s our mission to support research, education, and awareness, and any gift that supports that mission is dear to our hearts.
Where to get it:Make your donation here, and be sure to check the box that reads, “Please send me a macular degeneration awareness pin.”
Eone TimePiece
Many watches designed for people with low vision are designed for function and not beauty. From the Eone website:
“Eone was founded to solve a problem: to tell time, people who are blind have had to choose between intrusive talking watches, or fragile tactile watches. There were hardly elegant, quality alternatives. Eone founder Hyungsoo Kim was a graduate student at MIT when he learned of this problem through a friend who is blind. Guided by the conviction that everyone has a right to time, he collaborated with designers and persons with vision impairments to create a watch that everyone—sighted or blind—can use and enjoy.”
Why we like it: We learned about the Eone timepiece through Sensei Stewart who was featured in the AMDF documentary, Losing Sight, Finding Hope. It is a beautiful watch, and people with low vision deserve elegant solutions that don’t call attention to their vision loss.
Never mind low vision, how may of us have tried to find something in a black bag and felt like we were looking into a void? Feeldom started out creating bags designed for wheelchairs, but this bag was created for people with low vision. From the high contrast exterior and interior, to the tactile zipper pulls, this bag is a unique little powerhouse for portable organization for someone with low vision.
Why we like it: There are very few options for bags and purses designed for low vision. And because Feeldom designs for other disabilities, the zipper pulls are also easier for arthritic hands.
The purpose of these events is to raise awareness about the need for increased eye research funding to keep pace with the cost of meaningful eye research. While AEVR’s goal is to increase funding for all eye research, AMDF’s role over the years has been to represent the interests of the AMD patient population.
This year, AMDF sent two representatives: Matthew Levine, AMDF Director of Grants, Advocacy and Partnerships; and Jennifer Williams, AMDF Director of Communications and Community Engagement. We were sad that our founder, Chip Goehring, and our Secretary/Treasurer, Paul Gariepy, were unable to join this year due to a pending heart procedure for Chip.
We arrived in DC the evening before the main events, and a spontaneous meeting erupted in the lobby of our hotel! This gathering of minds included AMDF team members, AEVR Executive Director Dan Ignaszewski, AMDF grant recipient and Congressional Briefing featured speaker Dr. Neena Haider, patient advocate speaker and AMDF partner Mark Roser, and VisionAid.io cofounder Taylor Speegle.
While the lobby meeting was coincidental, the synergies among our small group were powerful. AMDF had invited Dr. Haider (whose promising gene therapy work AMDF supports) to speak with young scientists and legislators about the extensive commitment, time and financing required to produce meaningful scientific breakthroughs, along with a glimpse into her revolutionary approach to gene therapy. We had also invited VisionAid cofounder Taylor Speegle to make the experience of vision loss real by demoing his company’s immersive, augmented reality, low vision simulator, both at the Briefing and during one-on-one visits with legislators the following day. Mark Roser, with whom AMDF has a longstanding collaboration to distribute the self-monitoring tool called the KeepSight Journal, was there to personalize the Briefing by describing AMD patient anxiety and the counterbalancing hope that is generated by research breakthroughs and patient empowerment. And Dan Ignaszewski, with his extensive understanding of government functioning, kept on generating new possibilities for future collaborations between all of us!
Congressional Briefing
On Wednesday, September 20, 2023, AEVR hosted a congressional briefing in the House Rayburn Office Building. AMDF funded researcher, Neena Haider, PhD (Harvard Medical School) was the main speaker at the briefing, on the topic Advancements in Macular Degeneration: New and Upcoming Therapies.
Speaking to a full room of legislators, Congressional aides and young researchers, Dr. Haider gave a master class in how to speak about complex science to nonscientists during her presentation on her lab’s advancements in gene therapy research for macular degeneration.
The patient advocate speaker was Mark Roser, a long-time valued collaborative partner to AMDF as the creator of the KeepSight Journal.
Mark Roser, creator of the KeepSight Journal and AMD patient, shared his personal perspective with the audience.
Mark Roser and Neena Haider, PhD (seated) speak with to American Academy of Ophthalmology Congressional Affairs Director Mark Lukaszewsk, and AMDF Grants Director Matthew Levine.
Emerging Vision Scientists Reception
Representatives from AMDF later attended the Emerging Vision Scientists Reception where the work of 31 early-stage vision scientists from across the country was on display. The event, made possible by support a grant from Research to Prevent Blindness (with whom AMDF co-funds grants!), focused on answering the question, “How will this research delay or prevent the $717 billion annual cost of eye disease and vision impairment projected by year 2050?”
Lower right: AMDF Grants Director Matthew Levine listens to a young researcher present her poster.
Augmented Reality Makes the Reality of Vision Loss from Macular Degeneration Tangible to Researchers and Congressional Aides
Also featured at both events, in partnership with AMDF and AEVR, was a low vision simulator experience hosted by Taylor Speegle, co-founder of VisionAid and co-creator of the one of the world’s most advanced eye disease and vision loss simulators. The simulation experience was available for scientists and congressional aides, driving home the reality of what living with vision loss is really like. Particularly for scientists, it is one thing to examine the disease at the molecular and cellular levels, and an entirely different thing to be immersed in the lived experience of vision loss.
Such immersive experiences also have the potential to improve patient adherence to treatment, and we look forward to further collaborations with VisionAid to improve outcomes for patients.
Taylor Speegle of VisionAid demonstrates the augmented reality headset that simulates multiple eye diseases and stages of vision loss.
AMDF Joins Capitol Hill Visits
AMDF played a pivotal role in day two Capitol Hill visits to multiple congressional offices to urge policymakers to continue to increase funding for eye research. Among the visits AMDF attended were visits to:
AMDF Grants Director, Matthew Levine, pictured in far right of all photos, attending Capitol Hill visits in partnership with AEVR to urge policymakers to support and increase eye research funding to the National Eye Institute.
Looking Ahead
AMDF is dedicated to increasing our impact on Capitol Hill and beyond. We are currently in the planning stages of developing an advocacy event to occur during February, AMD Awareness Month. It’s too early to share our plans, but we hope to open opportunities for more patients to participate in person and through online efforts.
Your support means the world to us, and we encourage you to continue your involvement in our shared journey to find better treatments and a cure for macular degeneration.
As the leaves change color and the scent of pumpkin spice fills the air, we’re reminded that fall has arrived. Beyond pumpkin-spiced lattes and decorative jack-o’-lanterns, there are hidden riches in this season’s focal vegetable: the pumpkin. More than a staple for carving and baking delicious pies, pumpkin is also a useful vegetable for eye health and macular degeneration!
Its bright orange color is in fact a clue that tells us this vegetable is good for the eyes. Like all squash, pumpkin is rich in carotenoids, vitamin C and E, zinc, fiber, and when you cook the pumpkin from fresh (not canned), you also get the important carotenoids lutein and zeaxanthin, known for reducing risk of macular degeneration onset or progression. 1 cup contains 2.5 mg of lutein and zeaxanthin.
It’s important to get your nutrients from foods when you can, due to the synergistic components found in whole foods that are important for absorption. The beauty of nature’s bounty lies in its ability to provide a symphony of nutrients that work harmoniously together. Now, that being said, we’re not suggesting you not take the macular degeneration supplements your doctor has recommended. They certainly have their place in your eye health journey! But remember that whole foods should be your primary source of nutrition.
Pick the right pumpkin!
When cooking with pumpkin to get eye nutrition, there are a couple things to look for.
First, choose fresh pumpkin (not canned) if you can. Lutein and zeaxanthin are abundant in fresh pumpkin, but are lost in the canning process.
Not just ANY fresh pumpkin though! Carving pumpkins are not the same as pumpkin used for cooking. Look for the smaller, edible pumpkins best for cooking at your grocery store, often labeled ‘pie pumpkins’. If you’re not sure, ask the produce manager at your local grocery store.
If time is short and you must use canned, choose unsweetened organic canned pumpkin which has all of the other eye nutrients. Just add some sources of lutein and zeaxanthin (including omega-3 eggs, kiwi, grapes, broccoli, and peas, among other foods).
But what to cook with pumpkin? Here are three easy recipes to add pumpkin to your weekly menu this Fall and Winter.
3 Easy Ways to Add Pumpkin to Your AMD Diet™
There are so many ways that we can improve the health of our maculas through nutrition!! In addition to carotenoids, and specifically the carotenoids lutein and zeaxanthin, another important dietary consideration is fiber, especially “soluble” fiber (a prebiotic). The recipes below contain ingredients high in fiber, so be sure to drink more water to help prevent gas and bloating. Fiber helps the good bacteria in the body get stronger and more diverse, which helps the eyes immensely.
ROAST those pumpkins!
Serves 4 or more.
Cut one baking pumpkin in half, spoon out the seeds and put aside if you want to rinse and roast these, too. (Zinc!)
Take the large oven roasting pan, coat lightly with organic canola or avocado oil. (vitamin E!)
Open two cans of organic legumes (you choose, I like pinto and garbanzo beans). Drain and rinse. (soluble fiber, good fats, protein)
Cut up two bunches of Bok Choy (you can also use collards, spinach or kale), 2-3 stalks of chopped celery. (more antioxidants, minerals, and fiber)
Mix the legumes with the veggies (add more veggies if you wish).
Grab your favorite spices! I like the Italian ones (oregano, basil, herbal blends) or Savory ones (thyme, sage, herbal blends). Liberally apply to veggies.
Spread the veggies on the bottom of the roasting pan, set the oven to 370 degrees.
Take a fork, and scratch the inside of those lovely pumpkin halves, along the top edge too. Grab some extra virgin olive oil or avocado oil (good fats, vitamin E), and rub it into the grooves. Add some of the herbal seasoning if you wish (or just plain is ok too). Turn them upside down onto the veggies and legumes.
Take a sheet of aluminum foil and place lightly over the top of the pan. Slide it into the oven, bake at 370 degrees for 60 minutes, or when your fork easily pierces the pumpkin.
This same recipe will work for any squash, which is actually pictured in the last photo!
Now, for the SEEDS: An excellent snack for eyes and overall health.
Rinse and clean the seeds from the pulp.
Drizzle in some avocado oil (which can stand higher temps for longer), and coat all the seeds.
Take some of that lovely spice concoction (or just add salt and pepper) and add to the mixture to taste.
Per ½ cup: Calories 143, Protein 6g, Fiber 6g, lutein and zeaxanthin 4 mcg, with a bit of zinc. Predominantly high in monounsaturated fats (the avocado oil adds a bit of omega-3).
Bake at 370 degrees, in a separate oiled baking sheet from the roasted pumpkin, and spread them out to get a nice crispness. Bake for 10-15 minutes, stirring them every 5 minutes or so to get all sides roasted. YUM. You’re going to want to make more…..
Pumpkin Pie
Ingredients:
3-4 pounds small pumpkin, or acorn or butternut squash
1 tablespoon ground cinnamon
1 teaspoon ground nutmeg
¼ teaspoon ground ginger
pinch of ground cloves
½ teaspoon sea salt
¾ cup honey – local is best
2 large omega-3 eggs
1 tablespoon pure vanilla extract
1 tablespoon freshly squeezed lemon juice
1 pie crust, pre-baked, see below (or buy a frozen one without bad fats and emulsifiers…)
Directions:
Preheat oven to 350F.
Fill the bottom of a baking dish with ¼ inch of water.
Cut the pumpkin in half, remove the seeds, and place face down in the baking dish.
Roast the pumpkin in the oven for 45-55 minutes, until soft. Allow the pumpkin to cool, scrape the flesh into a bowl, then measure out 4 cups.
Puree the pumpkin in a food processor until smooth, 2 to 3 minutes.
Add the cinnamon, nutmeg, ginger, cloves, salt, honey, eggs, vanilla extract, and lemon juice. Pulse until well blended.
Pour the mixture in the crust. Bake for 50 to 60 minutes, until the filling is firm. Let the pie cool in the pan for 30 minutes, then serve warm.
Place flour and salt in food processor and pulse briefly
Add coconut oil and egg and pulse until mixture forms a ball
Press dough into a 9-inch pie dish
Written in collaboration with Barbara Olendzki, RD, MPH, LDN, Director of the Center for Applied Nutrition, Mass Chan Medical School, and AMDF Nutrition Consultant.All recipes courtesy of Barbara Olendzki and The Center for Applied Nutrition.
In fact, the research suggests that having AMD is a greater risk (25%) for severe COVID than Type 2 diabetes (21%) and obesity (13%).
Based on the evidence, the researchers suggest that lowering the activity of the PDGFB gene may form the basis of a treatment that lowers COVID infection severity. According to one of the study’s authors, there are already clinical trials underway for an improved wet AMD treatment that combines current anti-VEGF therapy with drugs that block PDGFB signaling.
While no advisory statements have been issued by medical groups, the AMDF believes that knowing that you have AMD, or that AMD runs in your family, should be taken into consideration when making decisions about risking exposure to COVID-19, and you may want to consult with your doctor about these findings to develop a treatment plan should you get COVID.
Chung J, Vig V, Sun X, Han X, O’Connor GT, Chen X, DeAngelis MM, Farrer LA, Subramanian ML. Genome-Wide Pleiotropy Study Identifies Association of PDGFB with Age-Related Macular Degeneration and COVID-19 Infection Outcomes. Journal of Clinical Medicine. 2023; 12(1):109. https://doi.org/10.3390/jcm12010109
In addition to some exciting new treatments now FDA-approved for the treatment of different stages of macular degeneration (published in the current issue of our print newsletter, In the Spotlight, several new treatment options for macular degeneration are on the horizon.
Emerging Approaches to AMD Treatments
The process of capturing light and transforming it into signals that the brain interprets as vision makes the retina the most bioactive tissue in the body, requiring huge amounts of energy, which is provided by mitochondria, the energy-producing organelles within cells. A new tool that improves mitochondria function may soon become available to slow the advance of AMD. Phase 3 clinical trials of a treatment known as photobiomodulation (PBM) have demonstrated sustained improvement in vision and a reduction in rates of new geographic atrophy in patients with intermediate dry AMD across two years. The non-invasive Valeda system (by Lumithera), already in use in Europe, exposes tissue to specific wavelengths of light, and reduces drusen development, slows the progression of geographic atrophy, possibly reduces conversion from dry to wet AMD, and may also slow the progression of Stargardt disease.
Scientists have found strong evidence that points to two disease processes in early AMD — with the potential to treat both. We already know that one of the earliest indications of AMD is the growth and spread of cholesterol-containing deposits behind the retina. The progression of one form of these deposits, called drusen, can be accelerated by eating a poor diet, high in carbs and saturated fats. The AREDS2 vitamin formula and the adoption of healthy dietary habits can slow their growth. But a second kind, called subretinal drusenoid deposits (SDDs), signal a greater risk for advanced AMD. Researchers believe SDDs are driven by a separate process — deficient blood flow to the eye, caused by vascular diseases — and that treating cardiovascular conditions may also treat SDDs. They further believe that AMD patients with observed SDDs should be warned that they may have undetected heart conditions.
Macular Degeneration Self Care Research
It’s possible that, later this year, wet AMD patients will have a new tool to help them better manage their disease. A home imaging device, called Notal Vision Home OCT, can take images rivaling those taken in an ophthalmologist’s office. Studies have shown that patients can set the device up and use it effectively to send images to the cloud, where a remote image analysis service can evaluate them — and their doctor can closely follow AMD progression, as well as the effects of treatment between office visits. In best case scenarios, patients who regularly use the device will be able to share critical structural changes in their retina, in real time, with their doctor, and reduce office visits by achieving the optimal time between treatments. Doctors, researchers and drug makers will also gain more detailed knowledge of how treatments and emerging drug delivery systems are working. The Home OCT has already been granted a Breakthrough Device designation by the FDA, along with reimbursement codes, in anticipation of its approval.
Gene Therapies for Macular Degeneration
In the next few years, therapies for AMD that use genetic material to cause the eye to make its own medicine may become available.
For wet AMD, RGX-314 (Regenxbio) and ADVM-022 (Adverum Biotechnologies) are in human trials and show promise. Both treatments instruct cells to make anti-VEGF proteins at therapeutic levels for up to three years. Whether these treatments represent one-and-done permanent solutions remains to be seen, but that is the goal.
For geographic atrophy (GA), a gene therapy called GT-005 (from Gyroscope, recently acquired by Novartis) has so far been found safe and effective in clinical trials. Rather than instructing the eye to manufacture a drug, GT-005 causes the eye to make more of a protein that the body normally releases to tamp down inflammation.
For Stargardts, sonpiretigene isteparvovec (Nanoscope Therapeutics) is the pharmaceutical name for a gene therapy for those with advanced vision loss from Stargardt disease,now in clinical trials. The emerging optogenetic therapy, which eventually may also apply to late dry AMD patients, adds genetic material that creates light sensitivity in bipolar cells for people who have lost most of their photoreceptors. Normally, bipolar cells are not light sensitive; their job is to convey visual information from the photoreceptors to the brain for processing into sight. Adding light sensitivity to these cells would not create full color vision, but would create the ability to perceive single-color versions of images.
In yet another use of gene therapy as a potential treatment for AMD, a Canadian research team has found that, by adding two, newly-identified genes, they can transform glial cells (which support the structure and metabolism of the entire retina) into cells that function as cone photoreceptors, which provide color vision and visual acuity. This approach represents an advance over stem cell transplantation by taking advantage of existing cells. The next step in refining this process will be the creation of fully functioning cone cells and the restoration of lost sight.
Stem Cell Therapy for Macular Degeneration
Whereas gene therapies seek to create new instructions to correct diseased pathways, stem cell therapies seek to create replacement parts.
Scientists at the National Eye Institute (NEI) have developed a potential tissue replacement treatment for GA. The first patient in a small clinical trial to determine the treatment’s safety has already received a patch of lab-grown, retinal pigmented epithelial (RPE) cells, surgically inserted under the retina, where their job is to replace diseased RPE cells and keep photoreceptors from dying. The patch itself is created by turning a patient’s blood cells into stem cells, then directing the stem cells to become RPE cells, and placing them on a biodegradable scaffold. Since the patch is grown from the patient’s own cells, there is no need to prevent the body from rejecting it by taking immunosuppressive drugs.
AMD Implant Options on the Horizon
Retinal prosthesis – There are promising reports coming from labs that are testing various aspects of a retinal prosthesis, under development by Pixium Vision, which is intended for patients with advanced dry AMD. The system combines a tiny chip that is surgically implanted behind the retina and wirelessly receives visual information from glasses containing a camera, connected to a pocket processor. In one study, patients were able to naturally integrate the central vision provided by the chip with their remaining peripheral vision, suggesting that the system could restore functional vision. In another study, implantation of the chip was found to cause only minor tissue changes following the minimally invasive surgery. Future versions of the system will provide greater acuity, which currently only allows very large letters to be read.
Implantable Miniature Telescope – A smaller version of the already FDA-approved Implantable Miniature Telescope (IMT) is entering clinical trials. Called the Smaller-Incision New-Generation IMT (SING IMT™, from Samsara Vision), this new design’s smaller size reduces surgical trauma, and it comes with its own delivery system, reducing errors in surgical implantation. The device is intended for people with late AMD, for whom other treatments have not worked, can only be implanted in one eye, and requires extensive vision rehab training.
New Drug treatments for Macular Degeneration Coming
FOR DRY AMD AND GEOGRAPHIC ATROPHY (GA)
Zimura (avacincaptad pegol), another eye-injection drug for the treatment of GA, has been given Breakthrough Therapy designation by the FDA, which will accelerate its development and regulatory review, creating the potential for it to become available to patients in the near future.
AVD-104 (Aviceda Therapeutics), an experimental, intravitreal injection drug for the treatment of geographic atrophy — that may also act like an anti-VEGF therapy in reducing new blood vessel growth — is entering phase 2 clinical trials.
Risuteganib and Elamipretide – Two investigational drugs for AMD that act by improving the function of mitochondria are in phase 2 clinical trials. Risuteganib (Luminate, Allegro Ophthalmics), delivered by intravitreal injection for intermediate dry AMD, restored significant functional vision for patients who had some vision loss, but not complete atrophy of the outer layers of the retina. Elamipretide (Stealth Biotherapeutics), injected into the skin of GA patients, has also shown a positive effect on visual function.
FOR NEOVASCULAR (WET) AMD
OPT-302 (Opthea) is a combo drug for wet AMD, but it operates in a different manner than other currently available anti-VEGF treatments, which block only one of three VEGF blood vessel growth promoters: VEGF A. Because blocking the activity of VEGF A may increase the activity of VEGF C and VEGF D (which also promote the growth of new blood vessels), OPT-302 combines an anti-VEGF A drug with additional anti-VEGF C and D “trappers” to improve the long term control of wet AMD.
D-45172.2 for Wet AMD – Early clinical trials are starting for a wet AMD treatment, D-4517.2 (Ashvattha Therapeutics). Patients would be able to inject the drug themselves, at home…and an oral form is also in development.
Axitinib – A new type of anti-VEGF drug — axitinib injectable suspension, CLS-AX (Clearside) — that is administered not into the center of the eye but into a space between the outer layers of the eyeball, has demonstrated the ability for patients to go 6 months and beyond between treatments in early clinical trials. The same drug, administered as a gel implant, OTX-TKI (Inlyta) that gets completely absorbed in the eye, is having similar success in early tests.
FOR STARGARDTS
ALK-001 (Alkeus Pharmaceuticals) is an oral vitamin A replacement, currently in human trials, that safely provides vitamin A’s functions in Stargardt patients while slowing the growth of lesions.
LBS-008 (also called Tinlarebant, from Belite Bio) is another oral treatment for Stargardt disease that is in late clinical trials. It reduces toxic vitamin A byproducts by reducing the delivery of vitamin A. Since dry AMD also involves the accumulation of the same toxic vitamin A byproducts, the drug is also in testing as a dry AMD treatment.
Losing Sight, Finding Hope: Living with Macular Degeneration
The new documentary, Losing Sight, Finding Hope: Living with Macular Degeneration, from The American Macular Degeneration Foundation, and created by filmmaker Nick Czerula, premieres on YouTube on:
Monday, March 20, 2023 at 8PM EST
View the teaser below:
How to Watch
The full documentary, Losing Sight, Finding Hope: Living with Macular Degeneration, can be watched in the viewer below, or on YouTube at https://youtu.be/XSApwfhJJPg, during the premiere on March 20th, at 8PM EST. (The viewer below will not play UNTIL that date and time.)
Can’t Make the Premiere?
Don’t worry! AFTER the premiere, the film will be available to watch anytime at the same link, or in the viewer below.
What to Know About YouTube Premiere Viewing
YouTube offers a “premiere” feature that allows us to release a video on a particular date and time, and for viewers from across the country to watch the premiere at the same time.
In terms of actual viewing, it’s not much different from watching any other video on YouTube, but there are a few things to know.
The film will auto-play on YouTube at the set time and date (March 20, 8PM EST) – as long as you’re on the premiere page at https://youtu.be/XSApwfhJJPg, the video will automatically start playing at 8PM EST on March 20th.
There will be a one-minute countdown – YouTube automatically inserts a countdown that will start at 8PM and run for one-minute. This gives you a moment to settle in for viewing. This is not part of the film, just a YouTube feature that only happens during the premiere viewing.
You can pause, and even rewind, but not fast-forward – During the premiere viewing time, you can pause or rewind if you missed something, but you will not be able to fast-forward past the point of play that is current. For example, if the film has been running for 20 minutes, and you want to go back to the 15 minute mark, you can do that, but you wouldn’t be able to fast-forward past the 20-minute mark. Keep in mind that if you DO pause or rewind, you will be out-of-sync with other viewers. This only really matters if you are participating in the optional chat (more below on the chat feature).
Once the premiere ends the video is available to view anytime at the same link – Once the film has played in full, the premiere is “over” and the video will behave like any other YouTube video from then on. You will be able to watch it anytime you like, even if you didn’t view during the premiere.
You have the option to chat with us and other viewers during the premiere.
If you watch during the premiere time on YouTube, there will be a chat box available to the right of the viewer window where you can chat with other viewers, and some special guests from AMDF and the film. THIS IS OPTIONAL. Keep in mind, if we have a lot of viewers, the chat can get very crowded and fast-moving, and the chat font size is small (a YouTube feature we can’t customize).
If you DO want to participate in the chat, you will need to be logged into YouTube. If you have a gmail account, you can log in with that. Otherwise, you may need to create a new account.
The chat is only available just before and then during the premiere film viewing time. Once the film ends, the chat is automatically ended by YouTube.
The good news is that there are other options to leave comments or ask questions if you can’t make the premiere, don’t have a Gmail or YouTube account, or would rather focus on the film while it’s playing and comment after. You can:
Leave a comment here on this blog post. Just scroll to the end and leave your comment.
Leave a comment on YouTube below the viewer window. You’ll need to be logged into YouTube to leave a comment there. If you have a gmail address, you can use that to log in. Otherwise, you may need to create a new account.
This powerful, 48-minute documentary features people living with vision loss from macular degeneration, and special expert guests.
From macular degeneration diagnosis, to losing sight, to new ways of living and hope for the future – five patients share their stories, their vulnerabilities, and the wisdom they’ve gained through their personal journeys living with vision loss from macular degeneration.
Expert guests shed light on what we know about macular degeneration, and provide hope for what’s available to patients now, as well as what’s coming in the future.
Presented by The American Macular Degeneration Foundation
Dr. Dorothy L. Hitchmoth – “America’s Eye Doctor”, nationally recognized, award-winning professor, lecturer and patient advocate https://www.drdorothy.org/
Dr. Allen Taylor – Professor of Nutrition, Development, Molecular & Chemical Biology, and Ophthalmology, USDA Human Nutrition Research Center on Aging, Tufts University https://gsbs.tufts.edu/people/faculty/allen-taylor-phd
A groundbreaking, new frontier in macular degeneration treatment has been announced!
With the FDA’s approval of Syfovre™, for the first time there’s hope to preserve sight for millions of patients with the advanced stage of dry macular degeneration (dry AMD), called geographic atrophy (GA).
“This is extraordinary news,” said Chip Goehring, Founder and President of AMDF, “and offers hope, not only to geographic atrophy patients, but to the macular degeneration community as a whole, that advances in our understanding of all stages of this disease can lead to treatments.”
“The approval of SYFOVRE is the most important event in retinal ophthalmology in more than a decade,” said Eleonora Lad, M.D., Ph.D., lead investigator for the OAKS study, director of ophthalmology clinical research, associate professor of ophthalmology, Duke University Medical Center. “Until now, there have been no approved therapies to offer people living with GA as their vision relentlessly declined. With SYFOVRE, we finally have a safe and effective GA treatment for this devastating disease, with increasing effects over time.”
“GA is a complex disease that the field has spent decades trying to address, so we are humbled and proud to bring forward the first-ever treatment,” said Cedric Francois, M.D., Ph.D., co-founder and chief executive officer, Apellis.
What Does Syfovre™ Treat?
Syfovre™ is currently approved for the treatment of geographic atrophy, an advanced stage of dry macular degeneration.
Dry macular degeneration is the most common form of age-related macular degeneration comprising about 80-90% of AMD patients, and usually develops slowly. For some patients, dry macular degeneration can turn into geographic atrophy, which is characterized by lesions that continue to grow in size and eventually cause dead zones in central vision.
Geographic Atrophy can damage central vision in as little as 30 months.
The term geographic atrophy may be new even to those with macular degeneration because, until now, there was no treatment and little discussion between doctors and patients.
To date, the only AMD treatment available has been for the neovascular, or wet, form of AMD. In the wet form (affecting 10 – 20% of AMD patients), leaky blood vessels cause sudden central vision loss — a process that can be halted with regular injections of anti-VEGF drugs into the eye.
How Does Syfovre™ Work?
Syfovre™ is administered by injection into the eye, and works by targeting a protein in the complement pathway.
In clinical trials, Syfovre™ was shown to reduce the rate of geographic atrophy lesion growth by up to 36% with monthly injection.
Dosing is set at about every 25 to 60 days, according to Apellis, the drug’s manufacturer, depending on the individual’s response.
Syfovre™ is currently not a treatment for early AMD, and does not completely halt disease progression like anti-VEGFs do for wet AMD.
Syfovre™ continues to improve in its ability to slow the growth of sight-stealing lesions and is most effective at 18-24 months.
This is a new frontier in macular degeneration treatment. Since patients can have either dry AMD or wet AMD — or both — in either or both eyes, and because Syfovre™ cannot be administered at the same time as anti-VEGFs, new treatment regimens will have to be worked out between retina specialists and patients.
How to Get This New Geographic Atrophy Treatment
Syfovre is expected to be available by the beginning of March through select specialty distributors and specialty pharmacies nationwide. If you have geographic atrophy, or suspect you might, contact your eye care specialist to ask about Syfovre™.
In their words, “As a whole, these artists’ stories inspire a deeper respect for and understanding of the profound capacity of humans to remain creative and vital in the face of adversity and loss.”
Each film focuses on the history of each artist’s work, weaving in the vision loss from macular degeneration that impacts their work and how they’ve adapted.
Serge Hollerbach – A Russian Painter in New York
“I think partial loss of vision freed me from attention to detail.” – Serge Hollerbach
In this short, award-winning documentary, the Russian emigre painter Serge Hollerbach (Nov 1, 1923 – Feb 19, 2021) creates two paintings, separated in time by a period of four years during which he has visibly aged and his vision has declined. While painting, he discusses art, his displacement during World War II, building a new life in New York City, and how vision loss has affected his ability to paint.
Lennart Anderson – Seeing With Light
In Seeing with Light, the artist Lennart Anderson (August 22, 1928 – October 15, 2015) works on a portrait of his friend and fellow artist, Kyle Staver, as he discusses his life and work. Though he struggles to see her, he is determined to continue his life-long interest in portraiture. First released on Oct. 30, 2014, it was one of our first major projects at the Vision & Art Project.
It’s not until 8 minutes in that it becomes apparent Lennart is working with vision loss, as you see him position his eyes inches away from his canvas and tilt his head in order to see what he’s working on. This moment is a breathtaking illustration of the artist’s perseverance.
Robert Andrew Parker – A is for Artist
In A Is for Artist, the Connecticut-based artist and illustrator Robert Andrew Parker talks about the impossibility for him of a life without painting and how he ‘keeps on keeping on’ by embracing the inevitable changes that vision loss has brought to his work.
About the Vision & Art Project
The Vision & Art Project is an AMDF-supported project that chronicles the intersection between macular degeneration and the arts.
From the Vision & Art Project’s website: “Our mission at the Vision & Art Project is to give greater visibility to the overlooked influence of vision loss from macular degeneration on historical and contemporary artists. We strive to ensure the legacy of individual artists, to educate the public about macular degeneration, vision, and art, and to inspire a deeper respect for the human capacity to adapt and change. Our hope is that the work we present provides incontrovertible evidence that, even with compromised eyesight, the visual world remains beautiful and within reach.”
