2020. What a challenging year!
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.
60 responses to “AMDF 2020 Year-In-Review and What’s Coming Up in 2021”
Might I have a copy of my survey response?
All of the responses were anonymous so we wouldn’t have any way of knowing which was yours. This helps protect the privacy of those who respond.
I pray for the day when no one will ever have to go through the possibility of loosing their sight. Bless everyone who are working toward that goal. Thank u
We pray for that day too!
Thank-you, for your comment and for your prayers. I am a prayer too and thankful for all the doctors and researchers and funding that works towards a cure for AMD.
That’s an exciting plan. I hope I am on the mailing list. This is my first communication with AMDF I am definitely going to the website.
If you got an email from us today about the survey than you are indeed on our mailing list! Thank you!
I’ll look forward to your YouTube video.
Glad to hear!
Would like to know if there are blogs, podcasts or forums for people with macular degeneration so we could share ideas for making life easier and more productive. That would be very helpful.
There’s this blog, and we’re in discussions about developing a podcast for people with AMD. Can you expand more on what you would like to see?
I would like suggestions for things to do to pass the time other than watching (listening ) to TV and radio or listening t audio books.
Lois, we highly recommend adding a meditative exercise practice into your day such as Tai Chi, Qigong, or Yoga (please check with your physician first). Almost all of these have modified versions if you need to be in a chair, or even lying down, but this will help with balance, breathing, overall health, and there is evidence that exercise may also help slow AMD. These forms of exercise also help calm the mind.
We will be releasing a video in the next few weeks with a yoga instructor who herself has macular degeneration!
I think lack of exercise as an introverted, bookish child set me up for AMD. People need to develop active habits and then maybe the drusen wouldn,t fog up the retina because we would have better circulation on a daily basis. Also, please publish more info on the harmfulness of the spectrum,s blue ray…how to avoid.
Thank you for the feedback Natalie! Many on our team could qualify as introverted and bookish. 🙂
I would like your address to be able to mail a donation. I do not donate over the internet. I have had too much trouble with hackers of my credit cards. Please just email your address, Thanks vey much. You do wonderful work! Can I help?
Marge, you can find our address as well as forms (if you need one) on this page of our website: https://www.macular.org/want-to-help/donate/mail-donations
Thank you for your support! We’ll be expanding the ways the AMD community can be involved in our mission in 2021.
Thank you for contacting me. I signed to receive email and appreciate the opportunity. May I suggest that there is much latent talent available to your organization in the AMD community. Have you considered using it?
Well we would love to hear more of your thoughts on this! You can send us an email through our contact form.
Reading and responding to this communication gave me eyestrain and tearing in my affected eye.
Oh, very sorry to hear that!
I was going to ask how come the print is so small for people who have serious eye sight deficiencies.
Provide information on stem cell studies for dry AMD treaments
We’ll see what we can do!
I would like to know about the progress of this research also.
We will do our best to keep you updated.
I APPRECIATE THE INFORMATION AND SUPPORT. SUPPORT IS VERY IMPORTANT. SOMETIMES IT IS EASY TO FEEL ALONE IN THIS BATTLE. WHEN I RECEIVE AN EMAIL FROM AMDA IT TELLS ME THAT I AM NOT ALONE. THERE ARE OTHERS WHO HAVE THE SAME SITUATION. MOST IMPORTANT THAT AMDA UNDERSTANDS OUR STRUGGLE. AMDA SUPPLIES INFORMATION, SUGGESTION, AND ALWAYS SUPPORTIVE.
You are NOT alone in this battle. And we’re so glad that our communications help you to know that.
Why don’t you encourage AREDS2?
We’ll have more about it on our next website update (coming soon).
Almost all funds should be allocated directly to scientific medical research in order to find a cure. Please do not waste funds. We need more people in the scientific and medical community to work on finding a cure.
We appreciate the sense of urgency (our president and founder has macular degeneration, and wants nothing more than to find a cure). Funding research is a big priority for us, but we were also founded on the mission of spreading awareness and information (and we know from feedback how valued this is). We will continue to do our best to balance the needs of people living with AMD.
I am an ARMD patient, having intravitreal injections every month. No cure. Nothing can stop Macular degeneration.
Diseases without cure have to be endured patiently.
We know it’s a struggle. Our founder also has macular degeneration.
I wish I could make a donation here but have made such elsewhere already. As 93 old pensioner I am limited as to being able to make donations. Please understand – as you surely do – that requests are coming in constantly and I try to respond elsewhere also. Please contnue you good work. We deeply appreciate it. Thanks. WZ
Thank you, Walter, for taking the time to let us know. Be well!
I can no longer work,I don’t know the benefits one having Advanced Macular Degeneration can qualify for.
Sandy, we have a blog post about Social Security benefits for those who can’t work due to AMD. Here’s the link. https://www.macular.org/qualifying-social-security-benefits-macular-degeneration
ARE YOU KIDDING ME, I JUSt wrote that I’m having proms seeing! How do you expect me to see the squares that have traffic lights to let you know I’m not a robot!!!
We’re sorry you ran into that Shirley. Where on our site did that verification show up? We’ll send this along to the webmaster and see if we can replace with something more low-vision friendly. Sometimes our hands our tied by the tools.
I would like to know what I could do to slow the progression. I want to know what is new with scientific research that doctors could use to help patients see better. Do you think it is possible for a cure to be found?
Three or four years ago, i signed up updates to AMD research. i have requested info several times since. This is the first outreach I have received. All of my research has been on my own tab. I am looking forward to further communications.
All I want is “hope” which ur website gives it to me and I thank u for that. Question: instead of AREDS, what would b the next best?
super very interesting
So sorry I can’t donate. I am 83 and money is limited. So glad to see this information. Would like more information about treatments. Sometimes I find myself doubting if my treatment course is correct. I do not go to retina specialist but to ophamologist. Is that sufficient?
You should look into seeing a retina specialist.
Do you have info on retinal reattachment?
Please reach out to us through our contact information. https://www.macular.org/contact-us
Oh my goodness, everyone. HAPPY NEW YEAR!! Let’s all grab for that thing with feathers called HOPE. 2021 has to be better than 2020 and I hope it is for all of us who are coping every day with AMD.
Love this! Happy New Year to you!
Dear Foundation:
23and Me scared the hell out of me stating that my risk of AMD is 50 -70 times higher given the fact of having two of the more important genes for AMD allele mutations in each of the chromosomes.
The nuts and bolts of genetics, fallacies clarified may help in this day and age of Ancestry.com and 23andMe.
We actually reached out to 23andme to see if they would use a particular link to our website instead of just dropping people off at the home page. We get a lot of traffic from people who got similar results on 23andme but because we have no control over where that link goes it’s hard to offer information to people. You could possibly help with that by reaching out to them and letting them know it would be helpful if they would collaborate with us to provide better information. (Your message might be better “heard” as a customer.)
However, we are also updating and expanding our website and there will be more information about this.
I have had problems with my eye sight since I was 10 years old
After a bout with Measles my eyes were affected and I needed Glasses
to be able to see
A few years later I had cataracts which required surgery .
Later I also was diagnosed with Dry Macular Degeneration.
Luckily I was able to wear glasses which enabled me to continue
Reading, Became a Registered Nurse , and worked in Pediatric
Medicine -as well as receive a Masters in nursing .
That is quite a story Margel! Thank you for sharing. We admire your perseverance in the face of adversity!
Can you summarize the most common “extra inputs” that people added at the end of the survey. I believe that would be useful to us all.
Bill, we will be summarizing the survey as soon as we can and we’ll send out an email once that’s published. Thank you for letting us know that particular part is important to you!
Thank you for your efforts on our behalf.
In the survey, I shared what a blessing it is to be in a Forum that has provided information that has allowed me to more fully understand and cope with what could be a horrible, life-changing disease. Nowhere else can I find personal experiences that teach so much beyond what my doctors will take the time for and/or from pamphlets from his office. Please allow me to help others by suggesting they go to HealthUnlocked.com and enter AMD in the search bar. It is UK based so any insurance information can be ignored but to my knowledge, there isn’t an American version of this tool that has literally been the source of such comprehensive, useful PERSONAL information. Hopefully, your forum can take its place but in the meanwhile, I hope others with AMD will find it as useful and as encouraging as I do. Thank you for the opportunity to share this with them.
Warm regards.
Thank you for sharing Ellen. We are looking for more ways to connect with the community!
Using the computer to find websites, answer emails, and communicate with family and friends is the most exhausting thing I do each day. My eyes aren’t good for much for a couple of hours after I finish. Sadly, I am a writer and like to compose with a keyboard. I write stories about my life and lead a group here in the senior residence where I live for residents who are down – depressed and anxious – as a way to take them back to a better time in their lives. We write by hand in a notebook, use a prompt, everyone writes about the same prompt, we read aloud what each of us has written and then I read a more complete story I have written in the past to show how the result can be therapeutic.
Hello,
Oxford Recovery Center is interested in conducting research for patients with AMD with hyperbaric oxygen therapy. What would you say is the best predictor of improvement in vision? Would you measure the blood flow to the eye, intraocular pressure, central retinal thickness, biomicroscopic or dilated fundus exam? What is the standard of care for AMD? Thank you in advance for your insight.