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.
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:
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.
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.
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.
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!
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?).
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.
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.”
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.
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 holidays are upon us! Do you have someone with low vision from macular degeneration in your life? Or wondering what to put on your own wish list?
Finding a gift for someone with vision loss from macular degeneration may at first seem like a challenge, but there are some really great products that are sure to bring a smile.
When people start to lose their vision, other areas of their life are affected, like independence, mood, and cognitive stimulation. AMD patients can suffer from loss of independence, depression, and cognitive decline as a result.
We wanted to create a gift guide that honors the unique needs of people with AMD while being fun, innovative, unique, and inspiring. While there are plenty of low vision products on the market, these are a few of our favorite things.
Gifts that Keep them Sharp
Did you know that the loss of one of our senses is linked to cognitive decline? Help your loved one stay sharp with these gifts.
Audio Book Subscription For the AMD person in your life who is struggling to read print, an audio book subscription will let them enjoy listening to their favorites. Make sure they have a device they can listen on.
Why we love it – well, mostly because we’re a bunch of readers ourselves!
Where to get it – Audible is one of the more popular audio book subscription services and you can sign up here.
Kindle – the kindle is a lightweight, no-fuss electronic book reader.
Why we love it – Kindle was already a good choice as a reader for low vision, but now they offer specific accessibility features for low vision like the voice-view screen reader, larger font sizes, contrast options, and more. Not to mention, no blue light!
Other ideas – large print word and number games like crosswords or Sodoku are often available in large print versions. Great stocking stuffers!
Gifts of Independence
Shrinking independence can be one of the most frustrating aspects of vision loss. Give a gift that helps maintain or extend independence and you’ll be sure to make it onto the nice list!
Amazon Echo – a “hands-free speaker you control with your voice” to play music, get news, sports, weather, and more. Connection to other smart devices opens more potential.
Why we love it – Another Amazon product? We know. But Anna Schaverian said it best in her review of Amazon Echo for her blind father, “Being blind in a world of screens makes you feel like you’ve been left behind.” We’re happy that tech is evolving beyond screens so the visually impaired can get some use out of it too!
Brightech LightView Pro – Designed for aging eyes, this professional-quality 42-LED floor lamp boasts the largest available magnifier lens, made of authentic diopter glass, with a 15″+ focal range.
Why we love it – Lighting and magnification are two of the best tools that allow for the continuation of daily activities and hobbies, and this provides both in one tool that adjusts to different heights for different situations. We haven’t yet tried it, but one of our staff members ordered it for her mother for Christmas based on positive reviews.
Along with maintaining independence, people with vision loss from AMD need to stay social to ward off isolation, but not being able to participate easily in things can be an obstacle. These two gifts, one fun, and one practical, are great isolation busters, AND when you purchase either of these gifts, a portion of the proceeds go to AMDF to support our mission.
Big Letter Bananagrams – Fast-paced word game with 50% larger letters for people with low vision.
Why we love it – Because this version was inspired by a Bananagrams fan with macular degeneration! Also, because our own Paul F. Gariepy can play without his magnifiers, and we tested it in the field and it was a hit with 4 generations at a family Thanksgiving gathering (you can read the whole story here).
Tip-n-Split – This handy device is a magnifier, light, and calculator rolled into one.
Why we love it – Restaurants are the WORST for the visually impaired with their dim lighting and small print menus. This device is more discreet than a smartphone, pocket-sized, and super easy to use. And you can read about the founder’s story here.
Low vision keyboard – large print, high contrast computer keyboard designed for the visually impaired.
Why we love it – from Jennifer at AMDF, “I was visiting my mother recently and she was trying to show me something on the computer. She was having to lift the keyboard to her face and alternate between lifting her glasses to see the keyboard and then put them back down to view the screen. That’s when it hit me to search for a low vision keyboard for a Christmas gift. I think she’s going to love it!”
Sometimes you write a letter and nothing happens. Sometimes you write a letter and something BIG happens.
Something big happened when Dodi Peterson wrote in to BANANAGRAMS™ to ask a question on behalf of her mother, Jan, who was losing her sight to macular degeneration.
“My mom loves Bananagrams and has been playing it daily, for years. Unfortunately, she is losing her vision from macular degeneration. Aside from the ‘Jumbo’ version (which is too big), do you make any other large versions of the game? Thanks!”
Little did Dodi know that her letter would spark the development of a whole new version of the game, raising money for macular degeneration, and an awareness campaign.
Big Letter Bananagrams is Born
When the team at Bananagrams read Dodi’s letter they decided to create something special for Jan – a large print version. The original plan was just to make the one copy for Jan, but as they looked into macular degeneration they realized how many people suffer from vision loss due to macular degeneration or other causes. It became clear that a big letter version of the game should be part of their product line.
Bananagrams worked with vision loss professionals to make sure the size and font of the tiles would be accessible.
Now that the game was developed, the Bananagrams team decided they wanted to do more. They wanted to help raise awareness and support research. That’s when they reached out to AMDF and told us about the new game and their plans.
In addition to donating proceeds from Big Letter Bananagrams to AMDF, they wanted to partner with us to raise awareness about macular degeneration with a fun campaign. We talked with them about how they had developed the game, and once we learned of the effort they had made to ensure the game was accessible to people with low vision, and we tried it out ourselves, of course we were on board! So we went to Rhode Island, home of Bananagrams headquarters, to help them kick off the launch of Big Letter Bananagrams.
AMDF Hits the Road
To help kick off the launch of Big Letter Bananagrams, we traveled to Rhode Island, home of Bananagrams headquarters to meet with the team and broadcast a live interview on Facebook.
AMDF’s Matthew Levine (left) sat down with Marketing Director Derek Weston (pictured center), and Design Director Kendra Harrington (pictured on the right), for the live interview. We talked about their visit with Jan, the inspiration behind the game, and bringing her the first copy of Big Letter Bananagrams. Kendra beamed as she told us, “She beat me at every game, and I was really trying!”
So Much More Than a Game
At AMDF, we were excited about another, invisible benefit of the new game design. Vision loss due to macular degeneration is associated with loss of independence, isolation, depression and cognitive decline. By creating an accessible game that’s both fun and brainy, and creating the Bring Big Smiles campaign, Bananagrams has also created a product that can help ward off some other quality of life declines that some people with AMD experience in a fun way.
Bring Big Smiles (#BringBigSmiles) is the campaign to raise awareness about macular degeneration. The idea is to share the game with someone with age-related macular degeneration (AMD), or if YOU have AMD, to invite others to play with you. Sharing and playing the game with others can help break down isolation, exercise the brain, re-connect families and communities, and, well, put a smile on everyone’s face.
Here are some ideas:
Bring the game to your next family gathering and watch multiple generations come together for some shared play. Tell them how the tiles and letters are bigger so that everyone, including people with low vision, can play easily.
Bring the game to your local retirement communities, senior centers, community gathering places, where there are likely to be several people coping with low vision issues including macular degeneration. Watch the faces light up as people realize how easy and fun the game is to play and how they can ditch the reading glasses and magnifiers!
Battle isolation by inviting neighbors and friends for an evening of game play. Sure, the tiles are bigger, but it’s the same game that everyone enjoys!
Every time you share Big Letter Bananagrams with someone is an opportunity to educate others about macular degeneration and vision loss in a fun way. Every time you share Big Letter Bananagrams with someone you put a dent in isolation, lift spirits, increase independence, exercise your brain, and you put a smile on people’s faces. You Bring Big Smiles.
When one of our team members, Jennifer, first held a copy of Big Letter Bananagrams in her hands, she knew right away she was going to bring the game to her next family gathering.
“There are several people in my family with vision problems. I have an aunt with macular dystrophy (which is really similar to macular degeneration central vision loss), a cousin who has already had cataract surgery, my mother who has had cataract surgery and is now losing her vision to what looks like wet macular degeneration, and my grandmother Eleanor (we call her Mimi) who had cataract surgery on one eye, is soon to get surgery on the other, and who has also been diagnosed with macular degeneration. And they all love words! I really think they’re going to love this game.”
She brought a couple copies of the game to her family’s Thanksgiving gathering and left them on a table while she went to help in the kitchen. Twenty or so minutes later she looked over and all the kids were gathered around and already in full swing playing the game.
“I really wanted my grandmother, Mimi, to try out the game. She’s been starting to struggle more with her vision, needing reading glasses and extra light, and she loves activities with her grandchildren and great-grandchildren, so I invited her over. The instructions are so easy that she was able to jump right in. And sure enough she had no problem reading the tiles!”
Eleanor got pulled away to help with dessert, but the kids continued to play on. After dessert, Jennifer brought one of the games over to the table where her mother, grandmother, son and Aunt were gathered. After quick instructions, the game was afoot.
“It ended up being my son, myself, Mimi, and my aunt playing, while others hovered over making suggestions. It was a quick-paced game, and other than my son, almost everyone at that table had vision loss of one kind or another, but with the big letter tiles, it didn’t slow anyone down one bit.”
Eleanor won that round, just in time for clean-up.
“Mimi was so tickled to win! I gave her one of the games to take home, and she tells me she even enjoys playing solo, but she’s going to play with a friend who has macular degeneration, and bring it to her community gatherings.”
So what’s Eleanor’s secret to winning a round of Big Letter Bananagrams?
“Well, maybe it’s because I love words! When I was about 10 years old I would read a page of the dictionary when I had time on my hands. But I also quickly discovered that if you make your first word as long as possible, that’s the trick.”
Join the Fun While Raising Awareness
Want to help us raise awareness about macular degeneration through the Bring Big Smiles campaign? Send us your photos and stories of how you’re sharing Big Letter Bananagrams and we’ll share on our Facebook page and/or website.
The holidays are upon us and that means lots of time spent in the kitchen. Cooking can be challenging for people with vision loss due to macular degeneration, but there’s no need to stay out of the kitchen this holiday!
Here are some quick and easy tips to help you stay safe in the kitchen and continue to participate in holiday food preparations.
At the cutting board
Choose a cutting board that contrasts with the food you are cutting – dark for light foods, light for dark foods.
Use a well-sharpened knife.
Use gooseneck lighting to add extra light to your workspace and set it BELOW eye level to reduce glare while giving you plenty of light.
At the stovetop
Avoid loose clothing/sleeves.
Turn off burners before moving a pan or pot.
When boiling, add items to the pot BEFORE heating the water.
To avoid oil burns and to keep oil from creating a mess, fry in a saucepan rather than a frying pan.
At the oven
Avoid loose clothing/sleeves.
Wear large oven mitts (preferably that go up to the elbow).
Pull the oven rack out to check on foods or to place into or take out of oven.
Guests in Your Kitchen
During the holidays, you may find more cooks in your kitchen than you are used to. If you have low vision or are legally blind, you might already have a personal system for organizing your kitchen and cooking in it. Make sure you let your guest cooks know how to follow the rules of your kitchen.
If you keep your kitchen organized and always put items back in their place, ask your kitchen guests to do the same.
Establish a standard location to place knives when not in use and put dirty knives behind the faucet until you are ready to wash them.
Also, ask your guests to face all saucepan handles to the same side, facing away from the edge of the stove so you’ll know where to reach and won’t knock them off the stove. If you’re unsure of where the handles are, use a long-handled wooden spoon to locate them.
Low Vision Kitchen Resources
And for the next holiday, and every day, ready your kitchen with low vision kitchen tools. Here are a few sites to get you started:
lowvisionchef.com – designed by a couple who have experience with macular degeneration!
Back in May, some members of our team attended the ARVO 2017 conference in Baltimore, MD. ARVO is The Association for Research in Vision and Ophthalmology and is the largest eye and vision research organization in the world, and the yearly conference is the largest gathering of those researchers and doctors.
Our mission in attending this yearly conference is to identify promising research and researchers that we might want to support, learn about what’s new in macular degeneration research and assistive technology, and raise awareness with doctors about our organization and how we can help them help their patients with information.
This year we had a bonus! We were there to see one of our supported researchers, Dr. Johanna Seddon, receive the Weisenfeld Award. Dr. Seddon of Tufts University School of Medicine and Tufts Medical Center was named the 2017 recipient of the Mildred Weisenfeld Award for Excellence in Ophthalmology for her pioneering work on the interplay of nutritional, environmental and genetic risk factors in age-related macular degeneration.
Her studies of lifestyle factors have influenced clinical practice world-wide. Her discoveries of common and rare AMD genetic variants have provided targets for therapies. Her predictive modeling insights have laid the groundwork for personalized medicine. And some of you may recognize her from the Eat Right for Your Sight cookbook which was created in collaboration with Dr. Seddon.
“AMDF has provided broad support for Dr. Seddon’s research for a number of years,” said Chip Goehring, President, AMDF. “We’ve made such a strong investment in her studies because she produces findings that we, as individuals with macular degeneration, can apply to our lifestyle choices. And we are delighted that she co-authored our AMDF Cookbook – Eat Right for Your Sight. This award confirms what we already believed: she is doing life changing work.”
Dr. Seddon’s findings include:
15 different genetic variants, including some rare and highly penetrant genetic variants, which are strongly associated with AMD in families;
smoking increases risk of AMD, lutein and zeaxanthin (carotenoids) and dark green leafy vegetables in the diet reduce risk of AMD, omega-3 fatty acids, fish and nuts reduce risk, trans fats and abdominal obesity increase risk, and exercise reduces risk of macular degeneration; the development of comprehensive AMD risk prediction models and an on-line risk calculator.
Her current work is focused on identifying genetic associations and interactions with non-genetic risk factors and sub-phenotypes of the disease.
How inventing a product to help restaurant goers with aging eyesight led her to discovering Age-Related Macular Degeneration and inspired her to give back.
“I didn’t know about Macular Degeneration until I invented this product.”
A few years ago, as she was approaching retirement, Connie Inukai found herself facing a challenge many do as they get older – reading small print in dimly lit restaurants. Instead of letting it go, she decided to find a solution. She set out to create a fun and useful product for restaurant goers who didn’t want to bring their smart phones to dinner.
The result is Tip-n-Split, a pocket sized magnifier, light, and calculator rolled into one.
Learning about AMD and Giving Back
In her journey to create Tip-n-Split and get it into the hands of people with diminishing eyesight, Connie started hearing about Macular Degeneration. Over and over it came up as she was meeting people at expos.
“So many people told me I could really use this, or my mom really needs this, she has Macular Degeneration. So many people seemed to have this, but I didn’t know anything about it, so I looked it up.”
Once Connie realized how many people were suffering from AMD, she wanted to make a contribution beyond the product. She reached out to us and let us know she wanted to give 10% of the proceeds from online sales to the cause of Macular Degeneration.
“At this stage in my life I want to start giving back.”
And she didn’t stop there. She sent us 12 Tip-n-Splits to give away as gifts. If you’d like to receive a Tip-n-Split for free, tell us about your Macular Degeneration solutions (or frustrating lack thereof) for reading the menu in dimly lit restaurants. We’ll send a Tip-n-Split to the first 12 commenters! Be sure to include your email so we can get in touch!
On a sunny day back in May, a team of people came together to cook for, photograph, and design a calendar with delicious foods good for eye health.
Some key people from the team that developed the AMDF cookbook, Eat Right for Your Sight, came together to create the Feast for the Eyes calendar. Jennifer Trainer Thompson developed the recipes, guided by the groundbreaking research of Johanna M. Seddon, MD, ScM, one of America’s leading experts in the field of age-related macular degeneration.
Before the photo shoot got under way, Jennifer Trainer Thompson was on deck for prep and to help organize and oversee cooking of the recipes she had developed.
Catrine Kelty (food stylist) reviews the order of recipes with Jody Fijal (food preparation). This was one of the few moments Jody wasn’t furiously cooking!
Jody and Susan tag-teaming clean-up between dishes.
Remnants from the Oysters on the Half Shell recipe (don’t worry, somebody ate them) which contains lutein and zeaxanthin, both good for eye health.
Christian Goulette, photography assistant, making adjustments to the camera before a shot.
Catrine arranges a dish for Joe Keller, photographer, while Christian makes tech adjustments in the background.
The team reviews how the shot looks on screen. Take a shot, review, make adjustments, rinse and repeat until it’s calendar worthy!
Blueberries for the Spinach Watercress Salad, plates awaiting the Carrot Soufflé Dessert, and in the background, empty oyster shells. All foods good for eye health!
The last step in the day’s process… in an adjacent room, Hans Teensma (middle) takes the approved photos and puts together the design of the calendar while Chip Ghoehring (background), AMDF founder and president, looks on to offer feedback along with AMDF’s Paul Gariepy (foreground).
Ok, the actual last step. Clean your plate!
The 2017 Feast for the Eyes Calendar is available in our shop or, through November [EDIT: now through December!], if you donate $100 or more to AMDF, we’ll send you the calendar as a gift [click here to donate]. Donations support AMDF in meeting the needs of those affected by age-related macular degeneration through education, supporting research and new technologies, and offering hope and resources to live, and even thrive, with the disease.
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.