AMDF is a 501(c)(3) non-profit, publicly supported organization (Charity ID #04-3274007). Contributions are tax deductible to the extent allowed by law.
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.”
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 Perseveranceof 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.
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.
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.
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.
Putting the pattern on red dot paper
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.
Closeup detail of the finished rug.
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.
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.
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.
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.
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.
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.
Here at AMDF, our tight-knit team switched from regular, in-person meetings to a year of working remotely and, yes, using Zoom! Perhaps you have also discovered this, but, somehow, that break from our usual routines inspired us to think outside the box.
Here are the highlights of 2020:
COVID-19 Response
Aside from having to change our internal work routines, we immediately thought about how COVID might be affecting the community and how we could help.
As information about Covid-19 transmission through close contact with others became available, we wondered: Would AMD patients, and especially those receiving anti-VEGF injections for wet AMD, have concerns about getting to a clinic, or about being in the clinic for a treatment? If they did have concerns, what should they know?
To find the answers, we connected with the American Society of Retina Specialists and developed a survey that would also help doctors understand patients’ perspectives. Then we sent it to our substantial email list, and received more than 1,500 responses almost immediately!
We reported those mostly positive findings in our summer print newsletter: 97% of those who’d had an appointment either went or rescheduled; 93% felt safe getting there; and 95% felt safe during interactions with doctors and staff. Finally, we incorporated them in a report, “Coronavirus and Your Macular Degeneration Care,” which we developed based on guidelines issued by the American Academy of Ophthalmology.
New Collaborations
With a strong sense of “we are all in this together” sweeping much of the nation, we also strengthened our connections with other mission-aligned organizations, and found some highly collaborative partners.
Among them…
We joined with Research to Prevent Blindness(RPB, with whom we also are co-funding research grants) and a number of other eye-science- supporting foundations to launch scEYEnce, a national messaging campaign created to focus attention on the astounding treatments emerging from vision scientists and the need to fund more at the federal level. AMDF supports five of the eleven researchers listed as AMD scientists.
We joined the Low Vision Working Group of the ITEM Coalition (Independence Through Enhancement of Medicare and Medicaid) to develop an advocacy plan for Medicare reimbursement for low vision assistive devices. Our letter to the Centers for Medicare and Medicaid Services is set to be delivered in early January of 2021.
And we connected with four other AMD nonprofits to pool our best resources for an AMD community, online bulletin board launching in early 2021.
Continued Commitment to Advocacy
Even though we could not make our usual trips to Washington, D.C. to bring the voices of the AMD community into meetings with legislators, we still connected them by using Zoom (what else?) to capture and deliver an empowering, Congressional Briefing message from Sensei Jack Stewart. Sensei Stewart is a Marine veteran who lost his sight to macular lesions in his 20s – as well as a sculptor, retired respiratory technician, master teacher (or sensei) of Zen archery and Japanese sword fighting, and Secretary and Treasurer of the Blind Veterans Association of Vermont.
Keeping the Research Wheels Turning
As the world’s focus turned to Covid, we kept our commitment to AMD research (with your help).
Throughout the pandemic, we have maintained a strong connection with new trends in AMD research, funding more than a half million dollars in grants, with some going to extensions of currently-supported scientists and some to new grantees.
From all of our funded researchers, we heard that they’ve had to adapt to Covid protocols in the lab, which rearranged their timelines to an extent, but did not derail them from advancing their work.
Some of the discoveries emerging from their investigations will be incorporated in an online educational program for patients and caregivers, due in February, that AMDF developed with support from a grant from Novartis. And all of their progress will soon be available on an upgraded AMDF web site, which we have quietly been building this year.
Coming in 2021
So much of our work in 2020 will be coming to fruition in 2021 and we’re pretty excited about these upcoming offerings!
Starting in early 2021, you will be able to access a more in-depth conversation with Sensei Stewart (who will teach you how to destress with a sigh) and his message to “improvise, adapt and overcome,” when AMDF launches new AMD – Mind, Body, Spirit video programming on our YouTube channel.
The shows are being created to address unmet needs of living with macular degeneration which, as it threatens sight, can impact our whole being.
In addition to Sensei Stewart, our pilot episodes include connecting you with a yoga instructor who is legally blind due to wet AMD yet teaches yoga to people with vision loss. You will also meet a deeply caring couple, one of whom has sight and one of whom does not, as they lead us through the subtleties and complexities of how vision loss impacts how we see ourselves, and how those perceptions impact our relationships.
We will also be launching a cooking series designed for optimum health and safety for people with vision loss and AMD.
So Much More
The above are just some of the highlights of 2020 and upcoming iniitatives in 2021. But there’s so much more, including announcements about important research developments, an upcoming PBS interstitial programming piece to raise awareness, a remake of our Hope and Cope DVD, initiatives to connect the voice of the AMD community to the medical community, Arts and Culture projects, upgrades to our website, and a relaunch of the free KeepSight journal.
Of course, our tireless team will continue our day-to-day work of connecting AMD patients to resources and materials and answering questions. So, please be in touch.
ALL of this is made possible by the generous and ongoing support of those of you in the AMD community.
Will you add your support? Before the year ends, you can become a supporting monthly member, or make a one-time donation today by clicking below.
Since the publishing of these guidelines in March of 2020, information has come to light regarding AMD patients’ risk of more severe illness if they contract COVID-19. Please continue to follow the guidelines below in regards to your eye care, follow the CDC recommended protocols to reduce your risk of infection, and read more about the research that indicates more severe COVID-19 complications for patients with AMD here: Study Indicates AMD Patients are at Higher Risk of COVID-19 Complications
Do You Have to Choose Between Your Health and Your Vision?
At AMDF we have been thinking a lot about how many of you in the AMD community may be concerned about being more at-risk from COVID-19 as described by the CDC (Centers for Disease Control) and how both fears and reality may affect your decisions about maintaining your AMD care.
To address concerns regarding macular degeneration care during the COVID-19 outbreak, we consulted with the American Academy of Ophthalmology (AAO), Dr. Johanna M. Seddon, ScM, Professor of Ophthalmology at University of Massachusetts Medical School andDirector of the UMass Macular Degeneration Center of Excellence, and Dr. Rahul N. Khurana, Retina Vitreous Associates of Northern California.
What you might expect at the clinic
AMD clinics are taking precautions to insure the health and safety of patients by reducing the potential for virus transmission and enforcing social distancing. Though each office will have their own variations on protocols, the general guidelines they are following are:
Rescheduling routine patient visits
Postponing elective surgeries
Asking patients over the age of 60 without urgent ocular problems to stay home
Having patients wash their hands immediately upon arrival
Decreasing the number of patients in the waiting room
Regularly disinfecting surfaces
Having staff members wear masks and gloves
Having doctors and nurses wear ocular and oral shields to prevent virus transmission during close examinations
Informing patients that the ophthalmologist will speak as little as possible during parts of the examination, and requesting that the patient also refrain from talking in these moments.
Additional precautions being taken at clinics:
Telling patients with cold, flu, and allergy symptoms to stay at home
Positioning a sentry at the door to screen entering patients
Screening patients with questions about fever, cough, travel history, and the travel history of family members
Asking that patients wear a surgical mask if they have any sign or symptom of respiratory disease
Rescheduling the visits of those who are sick, have a cough or fever, have been exposed to COVID-19, or have recently traveled outside the United States
Referring patients and staff members with a temperature above 99.5º to their primary care providers
Limiting patients to only one visitor accompanying them (other friends or family must wait in the car)
Asking anyone accompanying a patient to remain outside the building, where they will be contacted by text message when the patient departs
Positioning chairs in the waiting room 6 feet apart from each other
Removing magazines and beverage areas from the waiting room
What you can do to maintain your vision health during these difficult times
For patients with early, dry AMD: postpone non-urgent doctor visits, maintain home monitoring and continue making healthy lifestyle choices.
“Patient – physician conversations are the most important element of establishing a patient’s course of action under today’s circumstances,” says Dr. Khurana, “Any change in your vision should be reported to your eye care specialist.”
If your doctor has advised supplements with lutein and zeaxanthin, continue with those, as well as an eye-healthy diet (which is also good for your heart and general health). However, if you are taking a supplement for AMD that contains zinc (which is included in the recommended AREDS and AREDS2 formulas), Dr. Seddon advises that taking additional zinc lozenges for cold or flu prevention may lead to zinc toxicity. Check with your doctor, as your AMD supplement may already supply all the zinc you need to maintain your immune system.
Q:I have dry AMD that has, so far, been relatively stable. I have an upcoming eye appointment to monitor my condition. Should I keep or postpone the appointment?
A:As of 3/19/2020 the AAO is advising ophthalmologists to only see patients with urgent or emergent care needs. From their statement: “Due to the COVID-19 pandemic, the American Academy of Ophthalmology now finds it essential that all ophthalmologists cease providing any treatment other than urgent or emergent care immediately.“
If you qualify as at-risk for COVID-19 complications and you haven’t detected any changes in your vision, check in with your eye care specialist. It is likely your appointment will be postponed.
Q:I have dry AMD and have noticed a sudden change in my vision. I’m also at high risk from complications due to COVID-19. Should I see my eye doctor now?
A:In this case, call your eye doctor to discuss your vision changes over the phone to determine if there is any sort of vision emergency. You and your doctor will have to weigh how urgent it is for you to be seen in office. You may need to be seen by a designated doctor on call for urgent care.
Q:I spoke with my eye doctor and they feel it’s important to be seen in office to determine the cause of my sudden change in vision. I’m still worried that doing so could expose me to COVID-19 and I’m at high-risk. What should I do?
A:Most offices are taking extreme precautions and few people are in one room together, since non-essential appointments are being canceled.If your doctor feels it’s important for you to be seen in office, it’s reasonable for you to ask what precautions they are taking to reduce the risk of COVID-19 exposure and spread. .
“Don’t assume that a clinic is closed due to the coronavirus pandemic,” says Dr. Khurana. “Check with your doctor. Some areas are harder hit by the virus than others, but most offices are still open and trying to see patients in the safest manner. Guidelines for AMD clinics have been established, and each clinic has established their own version of these protocols, so please do not become concerned if circumstances at the clinic differ a little from those you have heard or read about.”
You can also ask if they have a private area to wait in rather than a crowded waiting room, or perhaps that they offer an appointment time when they know there will be low traffic. If you are extremely concerned about maintaining proper social distancing, you might also request that they contact you by cell phone as you wait in your car for your appointment. In this scenario you’d have to let them know that you have arrived and that you are waiting nearby.
Not every office may be able to accommodate special requests.
Q:I have wet AMD and receive monthly eye injections. I’m also in a high-risk group for COVID-19. I feel I’m having to decide between my vision and my health/life. What should I do?
A: This is a tough decision. Studies confirm that maintaining a regular schedule of eye injections is important in retaining the vision you have, and missing even one appointment can have a negative effect.
Remember that clinics are making special accommodations for high risk patients, as described above. Call ahead of your appointment to make sure that these are in place.
According to Dr. Khurana, “Seniors should not sacrifice their sight to fear. Anti-VEGF injections are essential for those who require them, and should not be skipped – even in a shelter-in-place scenario. If you must come in for essential care, take appropriate precautions like handwashing and social distancing, and come in.”
That said, there’s no question that your health and life are most important.
Call your retinal specialist’s office and request a phone appointment to discuss your options. Based on how long you’ve been receiving injections and how stable your vision is, your doctor may be comfortable with stretching the time between injections — but that is a determination that must be made by your doctor.
“The ophthalmic community considers our seniors and everyone in a high-risk group to be a valuable part of our society,” says Khurana. “We want to perform essential care to preserve your sight.”
Q:I’ve spoken with my doctor and feel the office is accommodating high risk patients safely. However, my transportation there feels risky (public transport, or a driver). What should I do?
A:Many people are suddenly working from home and may have more flexibility to give you a ride. If you have a friend, neighbor or family member who can drive you, and who you trust has been extra careful with their own exposure, this would be a better option than any type of public transport, ride-share, or public service transportation.
Ask that they wear a mask, and don’t be embarrassed or shy in asking about their exposure and what measures they’ve been taking to stay isolated.
If you must take public transportation, you can use anti-viral wipes to disinfect your seat and any grabs bars, and wear latex or similar gloves which you can also cleanse with hand sanitizer if you cannot access a washroom. Once at the clinic, you may be asked to dispose of the gloves and to wash your hands.
About The American Macular Degeneration Foundation (AMDF)
AMDF is a patient-centered foundation that supports potentially game-changing Age-related macular degeneration (AMD) research, education and advocacy in order to improve quality of life and treatment outcomes for all those affected by AMD (macular.org). Contact us at 413.268.7660 or 1-888-MACULAR (1-888-622-8527)
About the American Academy of Ophthalmology (AAO)
The American Academy of Ophthalmology is the world’s largest association of eye physicians and surgeons. A global community of 32,000 medical doctors, AAO protects sight and empowers lives by setting the standards for ophthalmic education and advocating for patients and the public. AAO innovates to advance the ophthalmic profession and to ensure the delivery of the highest-quality eye care. For more information, visit aao.org.
About Dr. Seddon
Dr. Seddon is a world-renowned retina specialist and genetic epidemiologist, recognized for her groundbreaking research on lifestyle factors , nutrition and the associations of these modifiable factors with macular degeneration. The advice to eat green, leafy vegetables, increase lutein and zeaxanthin intake, and adhere to healthy habits like not smoking and getting exercise, evolved from her early work which has changed the management of macular degeneration. She and her team also discovered many of the known genes related to macular degeneration. As Director of the UMass Macular Degeneration Center of Excellence she oversees patient evaluation and treatment. In addition to being a research scientist, Dr. Seddon also sees patients at several locations in Massachusetts.She co-authored the American Macular Degeneration Foundation’s cookbook “Eat Right for Your Sight,” based on scientific studies of the impact of nutrition on eye disease.
About Dr. Khurana
In addition to seeing patients, Dr. Khurana is active with clinical research in developing new treatments for various retinal diseases. He has published over 100 peer reviewed scientific papers, been honored with numerous national awards and involved in over 90 clinical trials. Dr. Khurana is heavily involved with the American Academy of Ophthalmology and the American Society of Retinal Specialists where he serves on many committees. He currently serves as the Editor-in-Chief of the Ophthalmic News and Education (ONE) Network, which serves more than 100,000 eye physicians and surgeons around the world. Dr. Khurana was recognized by the American Medical Association as one of the top 51 emerging national leaders expected to make a strong impact on the future of medicine.
Our Favorite 2019 Gifts for People with Vision Loss from Age-Related Macular Degeneration
A couple of years ago we wrote our 2017 AMDF Gift Guide, and that blog post still gets hundreds of visitors per month. We were delighted that so many people have an interest in thoughtful and useful gifts for their loved ones with AMD vision loss!
Vision loss can negatively affect many areas of a person’s life – independence, mood, isolation/loneliness, and even cognitive decline. But these are not guarantees. With adaptation and the right supports, people can continue to thrive despite vision loss from age-related macular degeneration.
The gifts selected here honor the unique needs of people with AMD while being fun, innovative, unique, and inspiring.
Gifts to Keep the Brain Sharp
Vision loss due to macular degeneration is linked to cognitive decline. In general, it’s a good idea to keep exercising the brain as we age. According to Harvard Health, aside from getting good sleep and eating well (Mediterranean diet), activities that stave off cognitive decline include exercise, brain stimulating activities such as games, playing music, reading and writing, and social connections and interactions. Here are a few fun gift ideas that will tickle the brain and help keep you or your loved one sharp!
Exercise Classes
Whether a membership to a local class, a personal trainer, or in-home DVDs, this gift will encourage your loved one to keep moving. We recommend Tai Chi because it combines relaxation and focus through movement, it’s low-impact, is shown to help with balance, and can be done by anyone at any fitness level. Tai Chi can even be done sitting down!
Why we love it – it’s a creative gift that you can renew each year.
Where to get it – Look for local classes and teachers, or get DVDs through Amazon. Here’s one we like, but there are many. Just search for “Tai Chi for beginners” or “Tai Chi for seniors”.
Low Vision Playing Cards
A great stocking stuffer that makes it easier for the visually impaired to pull out the cards for a fun game when company is over.
Why we love it – These large print, high contrast cards are easier to read for those with central vision loss. Not to mention the potential social benefits.
Other ideas – large print crosswords or Sodoku are often available in large print versions. See our 2017 Gift Guide for more ideas.
Surprising and Thoughtful Gifts
There are so many little frustrations throughout the day when you live with central vision loss. Many are things people with full sight don’t think about.
EZ Outlet Covers
We once heard from a woman with macular degeneration that one of the surprising little frustrations of vision loss was how difficult it is to see to plug things into outlets. EZ Outlet covers are designed to guide the plug into the socket without being able to see it.
Why we love it – It’s the little things that can make a big difference!
Where to get it – at MaxiAids (check out their other great products for the visually impaired) or Amazon (did you know if you shop through Amazon Smile they will donate a portion of the profit to a charitable organization of your choice?).
A Pedicure!
Central vision loss along with other issues of aging can make it difficult to do something as simple as trimming your toenails. A gift of a professional pedicure (for both women AND men) will not only pamper your loved one, but will also ease a frustration most people don’t think about.
Why we love it – this gift will delight on so many levels, and even better if you join them!
Where to get it – find a local nail salon or spa. Check reviews, and call ahead to see if they happen to offer special services to seniors. While you’re at it, ask if they offer any discounts if you pre-pay for 6 months or a year’s worth of pedicures.
Other ideas – Lighted and magnified mirrors for shaving and makeup application, and a magnifying toenail clipper.
Macular Degeneration Memoir
Twilight – Losing Sight, Gaining Insight by Henry Grunwald is one of the few memoirs on the market that is specific to losing sight from age-related macular degeneration. The New York Times Book Review described it as, “Splendid. . . . Grunwald weds a graceful, economic prose to a lucid vision of his changed world—exactly what we would expect from such a distinguished journalist—and produces a lovely book. In losing his sight, he has reached for light.”
Why we love it – While we haven’t read it yet (we just discovered it while researching for this post!), we love any resource that helps people feel less alone with their experience of vision loss.
You may be a primary caregiver and already offer your help on a regular basis, but planning out gifts of service can really change the dynamic in a positive way. Done well it can offer clearer boundaries for the caregiver, and relieve your loved one of always having to ask.
If you’re NOT a primary caregiver, this gift is not only great for the person with AMD, but also relieves some of the burden for the primary caregiver.
Once a person with AMD vision loss is no longer able to drive, their independence is greatly reduced. Additionally, lack of access to transportation can affect treatment options.
Depending on where you and your loved one lives, and your budget, there are many creative ways to offer rides. On the higher end, you can gift Uber or Lyft rides. Many areas offer various senior or other volunteer services for rides, and if your loved one isn’t already taking advantage of these it might be because they don’t know they exist, or are too proud to do the research. You can help them out by doing the research and getting things set up for them.
If you’re able to offer rides yourself, a coupon book is a great way to keep things manageable for you and your loved one. You can decide up front how many rides per month you can offer, what times are good for you, and parameters for “redeeming” the coupon (for example, how much advance notice do you need?). Your AMD loved one will appreciate the shift from feeling like a burden to receiving a loving and useful gift that’s been planned out so they don’t need to worry that it’s inconvenient.
Why we love it –Losing the ability to drive deeply affects people with vision loss due to AMD and is one of the losses we most often hear about from the AMD community. And we know that caregivers can get burned out. Expanding ways to get your loved one rides and shifting the dynamic around giving rides will have a huge positive impact for someone with AMD vision loss.
Low Vision Tech Gifts
Along with low vision due to macular degeneration come tried and true tools for daily living. The gifts below are updates on standard low vision tools.
Pebble HD Magnifier
A high-tech spin on an old-school tool. This electronic magnifier adds increased light, adjustable magnification, and contrast settings.
Why we love it – designed to be highly portable and versatile.
In the age of smart phones (which come with some great apps and built-in accessibility features by the way!), some people still enjoy landline phones at home. After we published our last gift guide we got a request for phones good for low vision. There are many options. You can search “low vision phones” to see more.
We found some that allowed “photo dialing” but due to central vision loss, photos might be hard to recognize, so we opted for the simple large button/large number design of this Home Intuition phone.
Why we love it: Because we love to hear from the community what products help them in their life, and this idea is a direct request from an AMD community member. We also love the simple design, the high contrast, and that it also features a loud ringer.
Other ideas: There has been significant advancement in electronic eyeglasses for people with vision loss due to macular degeneration or other eye diseases. We can’t recommend one over the other at this point because these products really need to be tested by the individual to see which works best for them. Some of the top options include SeeBoost, NuEyes, and Esight.
Gifts That Give Back
Eat Right for Your Sight Cookbook
Multiple studies confirm that diet can affect the progression of macular degeneration. AMDF developed this cookbook with eye healthy recipes in collaboration with Jennifer Trainer Thompson and Johanna M. Seddon, MD, ScM.
Why we love it: When you order directly from AMDF, you support the AMDF’s mission to provide education, increase awareness, and support research. Your gift to your loved one gives back to a cause close to their heart.
Where to get it: Directly from the AMDF website here, or Amazon here. ** Special note on ordering – if ordering from AMDF, you may want to call 1-888-622-8527 to check on Christmas delivery. If you order through Amazon, you can still give back to AMDF by shopping on Amazon Smile and choosing AMDF as your charitable organization.
Earlier this year we had the opportunity to review a different kind of vision assistance device. SeeBoost glasses are designed specifically for central vision loss due to macular degeneration or diabetic retinopathy.
What is SeeBoost?
Where other low vision assistive devices are designed for low vision more generally, the founders of SeeBoost wanted to create a device better suited to those with macular degeneration.
SeeBoost is an assistive device for low vision combined with prescription glasses.
We spoke with SeeBoost CEO Patrick Antaki. “SeeBoost is a new category of prescription glasses which are electronic and explicitly made for persons with macular degeneration. We started this company about six years ago because we were interested in how we could apply our technical talents to this problem of how to improve the vision of people with macular degeneration.”
Features:
Monocular Design – allows the wearer to maintain peripheral vision as well as eye contact with others.
Lightweight – allows longer use without causing neck strain.
Magnification, Brightness and Contrast Adjustments – three pillars for low vision are magnification, light and contrast. SeeBoost allows for easy adjustment of all three to allow the user to find the settings that are right for them and the situation.
Easy Controls – one knob is used for all adjustments, allowing the user to adjust easily as needed as they move task to task.
Auto-Focus – the camera auto-focuses to where the user is looking automatically.
Testing the Device
After hearing about SeeBoost glasses, AMDF’s Paul F. Gariepy was excited to try out the device. As an avid reader (and we do mean avid) Paul is always open to devices that will keep him reading for as long as possible with his AMD vision loss.
Paul was diagnosed with the dry form of macular degeneration in 2010 and had a retinal detachment in his right eye in 2015 resulting in 5 surgeries. He relies on the better vision of his left eye for most tasks.
We should also note that Paul is 60 years old and still working, where most SeeBoost clients are older and retired.
Paul spent a few weeks using the device with close coaching from Pat Antaki, CEO of SeeBoost.
Paul’s first impressions of the device were that it was, indeed, lightweight as claimed, high quality, with easy to use instructions and controls. He appreciated the high contrast for reading.
“The device feels light, not heavy. When the mini tv screen came on
for the first time, it was amazing. Really neat,” said Paul after first getting fitted at the optometrist’s office.
Paul tests reading with his newly fitted SeeBoost glasses at the optometrist’s office.
At home, Paul put his SeeBoost glasses through some tests.
“I read a few pages in my current book, Grant, by Ron Chernow. I did not have trouble seeing the words. Tried the toggle from black to white here. Found it easier to read with black letters and white pages.”
Along with the option to switch contrast, there are also options to adjust brightness and magnification — the three most important elements to assist low vision resulting from AMD.
These adjustments are made by means of a simple dial allowing the user to adjust as they switch tasks.
Paul worked directly with Pat Antaki, CEO of SeeBoost, to learn more about the device. “Pat said some people use the device for just one thing – reading a book, for example. Others use it for multiple tasks – reading, watching TV, seeing people’s faces when having a conversation. He said each user decides for his or herself how and how much to use it. He told me that if it is used for several tasks, it would be better to adjust the magnification for each separate task.”
Adjusting the device task to task takes a little getting used to.
“I tried reading a prescription medicine bottle. It took some adjusting to find the right magnification for me, but I was eventually able to read the small print,” said Paul.
Paul tested his SeeBoost glasses for his AMDF computer work.
“Right now, I am doing okay using my magnifying glasses. I use a magnifying glass while on the computer or opening the AMDF mail. I have my current work situation so that its pretty efficient, despite using a magnifying glass. I can find my place and the cursor pretty quickly,” said Paul.
“Using the SeeBoost on the computer, I seemed to have trouble finding the cursor.”
Pat Antaki told Paul that was a common problem and the cursor could be made larger or brighter or in color (which is a good tip for anyone with vision loss whether using assistive devices or not).
Paul found he was so used to his current system of using a magnifying glass for his computer that using the SeeBoost glasses slowed down his work process.
He said, “I find the See Boost device slows me down when I am entering data on the computer. I can see fine what I am doing but I need to keep moving my head up and down to check the computer screen to see that I am entering the data correctly and in the right cell. I have down for the information to enter, so my head is moving back and forth a lot and the mini TV screen needs to reset each time I turn my head.”
Pat Antaki offered some suggestions to make this process easier, but in the end Paul decided he wasn’t ready for the product yet. Not because it didn’t work, but because he had already developed routines and tools to navigate his day with vision loss, preferred the routines and tools he was used to, and his vision loss didn’t require the use of an assistive device for all activities (such as watching television for example).
Our Final Take
Overall we were very impressed with the device, and all the technical details designed for people with central vision loss. The team at SeeBoost thought of many things other wearable companies haven’t. For example, the light weight allows for all day wear without neck strain; the monocular design allows eye contact while interacting with others; the simple dial means not having to find or fuss with multiple controls allowing for more fluid and natural control; and of course, as we mentioned, the key components that help people with vision loss are central to the device – contrast adjustment, brightness adjustment, and magnification adjustment.
SeeBoost is still a new technology. Updates to the device will include better personalization. We see this as a very promising device for people with vision loss due to AMD. It won’t be for everyone, but for those who are in earlier stages of vision loss, or want to simplify their daily life with one wearable device as opposed to multiple devices and are ready to retrain their brain to work with the device, SeeBoost would be an excellent option.
Insurance won’t cover SeeBoost glasses in most cases, but financing options are available. To learn more about SeeBoost, you can visit their website at SeeBoost.com.
The American Macular Degeneration Foundation (AMDF), in partnership with Research to Prevent Blindness (RPB), has announced the recipients of the RPB/AMDF Catalyst Awards for Innovative Research Approaches for Age-Related Macular Degeneration, which provide seed money for high-risk/high-gain AMD research into both dry and wet forms of the disease. Each grantee will receive $300,000, payable across three years, pending a mid-point review.
Sabine Fuhrmann, PhD, Associate Professor, Vanderbilt University Medical Center, Nashville, Tennessee, will examine the potential of retinal pigment epithelium (RPE) cells to regenerate in mature mammalian eyes. RPE cells support the healthy functioning of photoreceptor cells, while their degeneration leads to progressive, chronic AMD. By identifying and using small molecule and other novel regulators, Dr. Fuhrmann’s lab hopes to stimulate a previously discovered, intrinsic, regenerative response.
Aparna Lakkaraju, PhD, Associate Professor, University of California, San Francisco, School of Medicine, will also be focused on the retinal pigment epithelium, studying RPE cell damage in early AMD using advanced microscopy to observe disease progression in living cells. While Dr. Lakkaraju’s goal is learning about the genetic mechanisms that initiate RPE decline, she will also evaluate therapies that can preserve the health of the RPE, using drugs that are either already approved for human use, or in clinical/preclinical development (an approach that can shorten the time to translate these findings to the clinic).
“AMDF is continuing to grow its vision research commitments,” said Chip Goehring, President, AMDF. “By supporting these accomplished researchers in pursuing potentially game-changing treatments for macular degeneration, we hope to accelerate the arrival of new, sight-saving breakthroughs. And, by combining our resources with the grant-making experience and expertise of Research to Prevent Blindness, we are sharply increasing our ability to advance the science.”
The Catalyst Awards support previously unfunded, innovative science conducted by highly qualified scientists, equipping them with flexible dollars that allow them to pursue new discoveries in the course of their investigations.
These 2019 RPB/AMDF Catalyst Awards are part of a larger collaboration, also supported by the International Retinal Research Foundation, that is funding a total of four grants.
“We are thrilled to welcome the American Macular Degeneration Foundation into this funding collaboration,” said Brian F. Hofland, PhD, President, RPB. “The number of applications for the Catalyst Awards was up this year and AMDF’s participation allows us to double our capacity to fund important AMD research. The potential for these innovative projects is significant.”
The co-funding of these RPB/AMDF Catalyst Awards for Innovative Research Approaches in AMD is part of a broader program expansion by AMDF which began with the inaugural AMDF Prevention Award in 2017 (to Johanna Seddon, MD, ScM, University of Massachusetts Medical School, for her pioneering AMD epidemiological and genetic research); the first presentation in 2017 of the AMDF Breakthrough Award (to Neena Haider, PhD, Department of Ophthalmology, Harvard Medical School, for research focused on disease pathway interventions); and the AMDF Prevention Award in 2018 (to Kip Connor, PhD, Department of Ophthalmology, Harvard Medical School, for research focused on the interaction between the body’s innate defense systems, nutrition, environmental factors, genetic profile and modifiable lifestyle choices). In 2019, AMDF sponsored two Travel Grants for young researchers to attend the ARVO international vision research annual meeting, and is co-sponsoring a series of grants with Fight for Sight.
Research to Prevent Blindness (RPB) is the leading nonprofit organization supporting eye research directed at the prevention, treatment, or eradication of all diseases that damage and destroy sight. As part of this purview, RPB also supports efforts to grow and sustain a robust and diverse vision research community. Since it was founded in 1960 by Dr. Jules Stein, RPB has awarded more than $368 million in research grants to the most talented vision scientists at the nation’s leading medical schools. As a result, RPB has been associated with nearly every major breakthrough in the understanding and treatment of vision loss in the past 50 years. Learn more at www.rpbusa.org.
Exercise Classes 
Low Vision Playing Cards
EZ Outlet Covers
A Pedicure!
Macular Degeneration Memoir
Pebble HD Magnifier
Low Vision Phone
Eat Right for Your Sight Cookbook
