Advocacy for a Cure: How AMDF is Making a Difference in Washington DC

September 2023

The American Macular Degeneration Foundation participated in Capitol Hill events hosted by the Alliance for Eye and Vision Research (AEVR) for the 5th year in a row.

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.

AMD patient advocate and creator of KeepSight Journal, Mark Roser, speaks at 2023 AEVR Congressional Briefing: Advancements in Macular Degeneration: New and Upcoming Therapies. — Mark Roser, creator of the KeepSight Journal and AMD patient, shared his personal perspective with the audience.

You can view the briefing in its entirety, courtesy of AEVR, on YouTube.

Seated: Mark Roser and Neena Haider, speaking to AMDF Grants Director Matthew Levine, and AAO Congressional Affairs Director Mark Lukaszewski. — 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?”

Multiple science poster displays in front of fountain. People perusing posters. — 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 offering demos of VisionAid eye disease simulator to scientists and congressional aides at AEVR Congressional Briefing — 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.

Pumpkin and Macular Degeneration

Pumpkin is a surprising source of nutrients good for macular degeneration.

Image with text banner. Text reads, "Pumpkin - A surprising source of nutrients good for macular degeneration" White letters on orange background, overlaid over image of three pumpkins in the grass.

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.

Small cooking pumpkin on white cutting board.

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.

Text banner reads, "Pumpkin Recipes for Macular Degeneration", yellow letters on dark blue background. Image of sliced pumpkin on a counter, and sliced roasted pumpkin in roasting pan, sprinkled with rosemary and peppercorn.

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.

Sliced bok choy, celery, leafy greens spread over beans in a roasting pan.

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.

Four halves of squash in a roasting pan, skin-side down, grooved with a fork and sprinkled with spices.

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.

Pumpkin seeds and pulp in a black plastic dish, with spoon.

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.

Gluten Free Pie Crust

Makes 1 pie crust

Ingredients:

2 cups blanched almond flour (good fats, protein, fiber)
¼ teaspoon salt
2 tablespoons coconut oil (limited saturated fat)
1 egg (omega-3)

Directions:

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.

Click here for more about the AMD Diet™, including links to our cooking show, free recipes, and more.

Research Concludes Macular Degeneration is a Risk Factor for Severe Covid-19

Fairly early in the pandemic, we reported that AMD might be a risk factor for more severe COVID infections. Doctors had observed high rates of severe COVID-19 infections and death among hospitalized patients who had AMD, but the evidence was anecdotal.

The most recent research, published by researchers at Boston University Chobanian & Avedisian School of Medicine, has identified a shared genetic risk factor between the two diseases — variations in the PDGFB gene, which plays a role in the formation of abnormal blood vessels in AMD — that puts people with AMD more at risk of a severe case of COVID.

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

New Treatments for Macular Degeneration on the Horizon

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.

New Documentary on Living with Macular Degeneration

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.
Write to us via our contact form.

About the Film

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

Created by filmmaker Nick Czerula, https://czvideoproduction.com/

Featured in the film:

Elizabeth Baker – Paralympian, Physical Therapist, Team USA site: https://www.teamusa.org/usa-triathlon/athletes/elizabeth-baker

Samuel D. Seavey IV -Assistive Technology Expert for the Blind & Visually Impaired, The Blind Life LLC: www.theblindlife.net

Sensei Jack Stewart – Artist, Tai Chi, Kyudo and Kendo https://www.barnettradepost.com/finearts/contemplativearts.htm

Lori Fletcher – Naturalist, Herbalist

Joan LeBaron – World Traveler

Experts include:

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

Beth Daisy – Occupational Therapist, Future In Sight, MS OTR/L, ATP https://futureinsight.org/

Chip Goehring III – Founder and President of The American Macular Degeneration Foundation

Matthew Levine – Director of Grants, Partnerships, Advocacy for The American Macular Degeneration Foundation

Breaking News – FDA Approves First Geographic Atrophy Treatment, SYFOVRE

Blue and white drug box. Label reads SYFOVRE (pegcetacoplan injection). New geographic atrophy treatment from Apellis.

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™.

Read the press release from Apellis.

Artists with Macular Degeneration – Three Films Highlight Creative Perseverance with Vision Loss

Old-school film reel with film stills featuring artists with macular degeneration, Robert Andrew Parker, Serge Hollerbach, and Lennart Anderson. Text above and below reads, "Three artists, creating in the face of vision loss"

In honor of AMD Awareness Month 2023, The Vision & Art Project put together a playlist of the films they have produced on three different artists with age-related macular degeneration (AMD).

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.”

AMDF Premieres New Film on ‘Living with Macular Degeneration’ for AMD Awareness Month 2023

February 8, 2023

As part of AMD Awareness Month 2023, The American Macular Degeneration Foundation announces the premiere of:

Life with Macular Degeneration
Patient Stories
Mary Toss: The Perseverance of Spirit

About the Film

In this honest, short documentary, Mary Toss shares her personal story of living with macular degeneration. She reflects on the reality of vision loss and grief, and the film reveals the eventual potential for the triumph of spirit.

Through interviews with Mary and conversations with friends and family, we get an intimate view into Mary’s daily life. From the tricks she’s discovered to adjust to vision loss, to the people who make up her support network, we see Mary persevering, with acceptance, and humor, to live independently with dignity.

AMD patient Mary Toss sits at table with her four daughters. Coffee and food sits on the table as the women talk. — Movie still showing Mary Toss discussing living with macular degeneration with her four daughters.

AMD Awareness Month 2023

AMD Awareness Month is a nationally recognized awareness month dedicated to raising awareness about the disease of age-related macular degeneration. You can learn more about age-related macular degeneration at What is Macular Degeneration.

You can help! Help us reach more people by sharing this article with your network, and if you’re on Facebook, follow us there and amplify the reach of awareness content by liking, sharing and commenting.

Another way to help is to support this work, along with research, education and advocacy through a one-time or monthly donation, or create your OWN awareness building Facebook fundraiser here.

AMD Awareness Pin Inspired “The Creation of a Rug that has Meaning to Me”

Debbie MacIntosh reached out to us earlier this year to ask permission to use the AMD Awareness pin design to create a hooked rug. What follows is Debbie’s inspiration and process in creating the hooked rug from the AMD Awareness pin design in her own words, accompanied by photos of the process. Small edits were made for clarity. Thank you Debbie for sharing your creativity and inspiration with us and the AMD community!

I have been a rug hooker for a number of years. This is not just a craft for me, but a vehicle to explore my own creativity. It has grown from a hobby to my way of creating statements of what is important to me, and my journey in this life. I may not be perfect in the execution of the design, but I am very passionate about it.

Debbie MacIntosh holds the finished rug she hooked based on the AMD Awareness Pin design. She’s accompanied by her Golden Sable Cocker Spaniel, Piper.

I have been following the American Macular Degeneration Foundation (AMDF) for quite a while now. I read the post of theirs that introduced the newly created AMDF pin. It was designed in an effort to raise awareness about age-related macular degeneration. The reason I follow the AMDF is because I have wet macular degeneration. I am currently undergoing treatments monthly. I have it in both eyes.

I contacted the foundation and asked if I might use the design of the pin to create a rug from the design. This was important because I want my rug hooking journey to reflect what is significant for me.

As a rug hooker, it is very important to follow the rules of copyright for obvious reasons of honesty. It gives me permission to copy the design of the pin which allows me to show my rug to fellow fabric artists. I was granted permission. to hook the design on Feb 22nd, 2022, and ordered the wool on March 24th. If I show it anywhere, credit for the design will be given to the AMDF.

We rug hookers are an artistically curious and supportive group with national and international connections.

My journey with this disease left me wondering if I would lose my sight, but perhaps, most importantly, it spurred me on to create beauty everyday. A woman I very much admire, Deanne Fitzpatrick, a noted fabric artist in Amherst, Nova Scotia, is a wonderful mentor to fabric artists. She has created her mantra, Create Beauty Everyday, to encourage and aid people in their personal development as fabric artists. She also speaks about creating what you love, and creating rugs that have meaning and beauty for oneself.

This pin fit the bill for me for several reasons: I hook with a number of people who are now retired. While rug hooking is getting wildly popular with the younger age group, many seniors are actively involved in this craft; a perfect age group to spread the word about age-related macular degeneration (AMD).

I also saw this pin as a work of beauty. Symbolism is important in creating rugs. The beauty of the abstract symbolism is perfect for the rug. Following is the description of the pin, as expressed by the AMDF:

EYES – The central shape of the design is comprised of four overlapping eye shapes. AMD is a disease that affects the eyes and vision.
THREE ORANGE DOTS – AMD is the 3rd leading cause of blindness worldwide. Risk increases with age, and is 1 in 3 by the age of 75.
BLUE IRIS – Though lifestyle and genetics play a role, people with blue eyes are at an increased risk.
STARBURST CENTER – AMD can lead to central vision loss as the disease progresses. Orange ‘petals’ surrounding the iris represents the marigold, a source of lutein and zeaxanthin. These nutrients have been shown to potentially reduce the risk of developing age – related macular degeneration, and for people who have AMD, to potentially slow the progress of the disease.

AMD Awareness Pin design on blue background. — AMD Awareness Pin design.

Creating the Rug

There are several steps in creating a rug. The first is really the thought process. Why do I want to create this rug? What colour scheme will I use? This was easier for me with this rug, as the colours are already established. However, wool must be dyed to match the colours.

Matching the Colors

I created the orange wool by dyeing wool from a gold blazer I had with onion skins. The black wool came from a deconstructed blazer. I made an artistic decision to use cream to outline the lines in the pattern. I consulted a wonderful fabric artist, Joan MacKenzie, who owns a local rug hooking shop in Sydney, Nova Scotia, and is an extraordinarily gifted dyer.

The blue was difficult for me to see clearly, but one thing I have gotten very comfortable with, is to ask other fabric artists to help with colour. I have NOT met one who is not gracious or helpful. Joan also helped me pick the white to use. You wouldn’t believe how many whites there are in wool! After Joan and I again met to discuss the wool, on April 2nd, I decided to not use the cream for the lines that create the 4 eyes; instead I decided to use a medium gold. This stood out better as the cream and white were too similar. I did not try to find a metallic golden yarn because it is synthetic and usually does not hook well for me. All the wool used is 100% wool, either new, or repurposed.

At the Virtual Rug Hooking School, in February 2022, members of the Rug Hooking Guild of Nova Scotia (RHGNS) offered valuable advice and support in the Find it Finish It (FIFI) Class. They are a wonderful group of supportive people who were helpful and interested in this rug coming to fruition. Ann Jones was the leader of the group, and she and all the other members of the class were so helpful, and we had lots of fun. Fun is important, and after 2 years of COVID, it was great to talk with other women, if only virtually.

Reproducing the Pattern

The next step is to reproduce the pattern on the backing. It obviously needed to be enlarged, but to what size? I had originally done it as a 6 in. round but decided to go with an 11 in. round so that I could get the detail in without crowding. I blew up the design as big as I could on my printer and then went to a business store to get it enlarged to the size I wanted. Here is the blowup of the pattern.

Transferring the pattern to backing is a bit of the sticky part for me. Luckily, my husband is super supportive and helped me transfer it to red dot. Red dot is a thin fabric which has dots that outline a grid that helps you keep your pattern straight. You put it over the pattern, and then trace the pattern onto the red dot with a sharpie. Then you transfer the red dot pattern to the backing, which in this case, I chose linen.

I can better manage straight lines because you can run a pencil between the ridges of the fabric and come out with a straight line. My hubby put the round pattern on the linen for me, which was very helpful to me.

Hooking the Rug

Since the pattern is now on backing, I have to cut the wool. I will be using mainly a #5 width cut in the various colours of the wool. The starburst center and smaller orange triangles, I chose to hook in a #3 cut, a smaller cut.

Now comes the super fun part, the actual hooking. I chose to start with the starburst symbol. This was the most emotional part of the rug for me, because it could reflect my future. I am thankful to the specialist who is following my progress. This is another emotion that is stirred in me, gratitude. I am just super grateful that my eyes have not deteriorated to the point I can no longer hook. If I get to this point, I will know that I have created pieces of beauty for my family and friends with much love, and enjoyment.

I hooked the starburst centre and left it at that as I lost the light. Black is a difficult colour to hook in the evening. Each day I do more. I have finished the outer blue and am now working on the small orange triangles.

I will continue to hook the small orange triangles while I am waiting for the medium gold wool to do all the outlining.

The medium gold wool was ready on April 2nd, and I am eager to start hooking in the lines. this lines will have to be slowly and carefully done. I always love a challenge and am so excited to fill in the lines. This is the extent of my hooking until April 4th.

On April 6th, I pulled the last loop of the rug. This makes me happy that I have created something that at times, presented a bit of a challenge for me. Here is a picture of the rug.

It still has to be pressed, hemmed, and binding put on. I am not sure if I will whip the outer edge yet, something to sleep on.

The finished rug is special for me. Of all the rugs I have done, this one is the only rug done especially for me. It presented some real challenges for me, but I loved every moment of making it. I hope this adaptation of the AMDF pin will help in some way, to promote public awareness of age-related macular degeneration.

There is more to life than dealing with AMD. The possibilities are out there. I know it can be scary, but you are not alone.

Many thanks to the American Macular Degeneration Foundation. Thank you for the work you do to promote awareness of this important health issue. Also, many thanks for giving me permission to adapt the pin to a rug. I loved the abstract design immediately, and in my somewhat biased opinion, made a lovely rug.

Finished rug next to the AMD Awareness Pin.

Study Indicates AMD Patients are at Higher Risk of COVID-19 Complications

A study conducted at New York Presbyterian/Columbia University Irving Medical Center, and published in Nature Medicine, indicates that patients with macular degeneration are at higher risk of complications due to COVID-19.

People with macular degeneration at more risk from COVID complications

The study, entitled “Immune complement and coagulation dysfunction in adverse outcomes of SARS-CoV-2 infection,” looked at 6,398 COVID patients during the first wave of the pandemic.

Among the patients, researchers tracked macular degeneration patients because, as Dr. Sagi Shapira explained, there was a suspected link between hyperactive complement system activity and more severe disease progression in COVID patients, and it is understood that macular degeneration is a disease driven by a hyperactive complement system.

You can read the original study here. https://www.nature.com/articles/s41591-020-1021-2

The authors found that macular degeneration was strongly associated with poor outcomes from COVID-19, including increased need for intubation and increased mortality. Those in the study with macular degeneration and who died also succumbed more quickly than other patients. Neither age nor sex could explain the increased succeptibility of AMD patients to this infection.

To be clear, this study does not indicate that AMD patients are more at risk of GETTING COVID-19, but IF they do become infected, they are at more risk of complications.

What You Can Do

We share this with you not to alarm you, but to empower you to make the best possible decisions for your health and safety.

Evidence is strong that wearing a mask (fitted and worn properly) while in public, social distancing, frequent and thorough hand-washing, and avoiding public and private gatherings (even amongst family and friends) greatly reduces your risk of contracting the virus.

Here is a link to a good guide on the level of protection different types of masks provide, what type of mask to wear in different environments, and how to ensure proper fit. https://www.washingtonpost.com/opinions/2021/01/26/n95-masks-safest-next-best-options/

And click here for another article on increasing your protection with double-masking and how to do it properly:

Additionally, intentional planning to reduce your number of outings reduces your exposure. For example, stocking up on groceries in order to reduce frequency of trips to grocery stores, or, even better, having groceries delivered, will reduce your exposure, and therefore risk, to the virus that causes COVID-19.

We are not doctors and can’t advise you on your decision to receive the COVID-19 vaccine, but we hope this information will help you make the best decision for you, under your doctor’s advice, as you make choices for your health and safety..

What Else You Can Do

Your doctors may not be aware of this study. COVID-19 is still a new virus and keeping up with all the information is challenging.

Before visits to any of your doctors, ask that they schedule you during low traffic times, ask what their safety protocols are, and let them know you have a condition that is suspected to greatly increase your risk of COVID-19- related complications should you contract the virus. You can also forward this study to them.

Please also see our guide, Coronavirus and Your Macular Degeneration Care .

If You Have Questions

While we aim to empower you with this information, we know that it may raise questions. You can leave your question in the comments below or send your questions to us through the contact form on our site. It’s possible that we won’t be able to answer all of your questions, nor respond to you individually, and remember, our team is not equipped to give you individual medical advice. But, if there are questions we can answer, we’ll update this article or answer your questions in comments.

Lastly

Please share this article with your friends and loved ones, both to inform them of your risk, but also so that they may share it with their friends and family so that we can get this information into the hands of anyone who needs it.

If this work is important to you, please consider supporting us today. You can become a supporting monthly member, or make a one-time donation today by clicking below.

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