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

    February 8, 2023

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

    Life with Macular Degeneration
    Patient Stories

    Mary Toss: The Perseverance of Spirit

    About the Film

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

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

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

    AMD Awareness Month 2023

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Creating the Rug

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

    Matching the Colors

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

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

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

    Reproducing the Pattern

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

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

    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.

    Finished rug next to the AMD Awareness Pin.
  • Study Indicates AMD Patients are at Higher Risk of COVID-19 Complications

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

    People with macular degeneration at more risk from COVID complications

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

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

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

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

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

    What You Can Do

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

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

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

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

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

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

    What Else You Can Do 

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

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

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

    If You Have Questions 

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

    Lastly 

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

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

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  • AMDF 2020 Year-In-Review and What’s Coming Up in 2021

    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 Comments
  • Coronavirus and Your Macular Degeneration Care

    Navigating Tough AMD Care Decisions During the Coronavirus Pandemic

    **Important Update as of 2/5/2021

    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 and Director 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.”

    At home, you can track changes in your vision by using the Amsler Grid (you can find a free downloadable version at our website here). It is advised to monitor at least once a week. 

    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.

    Find guidelines on healthy eating and some free recipes at https://www.macular.org/good-food. Find information on zinc consumption here.

    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.

  • 2019 Macular Degeneration Gift Guide

    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.

    Where to get it – on Amazon

    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.

    Where to get it – You can find it on Amazon here.

    Gifts of Service 

    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.

    Image by S. Hermann & F. Richter from Pixabay

    Rides

    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.

    Where to get it – Visit the Enhanced Vision website. 

    Low Vision Phone

    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.

    Where to get it: You can find on Amazon here.

    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.

    Other ideas: Accompany the cookbook with low vision cooking tools like this lighted, hands free magnifier for reading the cookbook, or low vision measuring tools.

    Happy Holidays from all of us at AMDF!


    Learn more about how to donate to macular degeneration research and education

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  • AMDF Reviews SeeBoost – Assistive Device for Central Vision Loss

    Paul of AMDF gets fitted for SeeBoost Device

    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.”

    SeeBoost Prescription Glasses for Macular Degeneration & Diabetes

    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.

    AMDF's Paul Gariepy tests reading with his newly fitted SeeBoost glasses
    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.

    AMDF's Paul F. Gariepy tests SeeBoost glasses with his computer

    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.

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  • Cutting Edge Research Grants Announced by The American Macular Degeneration Foundation, Co-funded with Research to Prevent Blindness

    RPB AMDF Catalyst Grant AwardeesThe 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.

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  • AMDF In the Trenches: Stimulating Research Through New Grants and Partnerships

    Through a growing portfolio of research grants and creative partnerships with other eye research funders, the American Macular Degeneration Foundation (AMDF) is finding ways to efficiently leverage its resources and accelerate the development of promising approaches to improve the lives of age-related macular degeneration (AMD) patients.

    At AMDF, we have been hearing from researchers that the scientific community’s knowledge base about AMD has grown significantly, that technology is creating the possibilities for new assessment and drug delivery tools, and that the time is now to make a push and convert decades of discoveries into actual treatments.

    As part of that push, the retooling of the AMDF Grants Program started in 2017 with the funding of Harvard’s Neena Haider, PhD, to pursue a “master switch” AMD gene therapy.  This year, the Foundation granted its first AMDF Prevention Award to fellow Harvard investigator Kip Connor, PhD, in the amount of $150,000. The award is for Dr. Connor’s proposed study, “Aging and Immunity in Age-Related Macular Degeneration,” which seeks to unravel the connections between some of the body’s immune cells (called microglia), the body’s inflammatory response, and nutrition-derived treatments.

    We are also developing partnerships in which the whole is greater than the sum of the parts.  We laid the groundwork for some of these during conversations that began at gatherings of eye researchers and eye research-funding groups last year and earlier this year. With Research to Prevent Blindness (RPB), AMDF is funding two researchers who, starting in January 2019, will each receive an AMDF/RPB Catalyst Award for Innovative Research Approaches for Age-Related Macular Degeneration (“Catalyst Award”) at a rate of $300,000 across three years.  

    RPB is the preeminent, nonprofit funder of research directed at the prevention, treatment or eradication of all diseases that threaten vision. With this partnership, we are creating an incentive for the world’s leading AMD scientists.  By aligning our resources with RPB, AMDF is more than doubling our capacity to foster life-changing breakthroughs.

    “RPB’s grant-making expertise and broad awareness among the nation’s top vision researchers, when aligned with AMDF’s passionate commitment to those affected by AMD, creates the potential to generate remarkable discoveries,” adds Brian Hofland, PhD, President, RPB. “We are extremely pleased to be joining forces with AMDF in supporting this kind of high risk/high gain research.”  

    The proposed studies submitted for these Catalyst Awards cannot have been previously funded by any other source, ensuring that fresh ideas will come to light. Some of them may be transformative.

    At the same time, we are also extending our partnership with Fight for Sight, a funder of young vision researchers.  The new grants, which will be announced at next year’s Association for Research in Vision and Ophthalmology (ARVO) annual meeting, will provide resources for postdoctoral scholars to conduct investigations and travel to the international ARVO meeting to share concepts with potential mentors.  This is a way to nurture the maturation of emerging scientists and maintain forward momentum through continuity.

    “Ideas make a difference,” says Joan Miller, MD, Chair of the Department of Ophthalmology at Harvard, and Chief of Ophthalmology at Mass Eye and Ear and MGH. “They come from individual brains, and it is a huge enterprise to have these ideas and people come together toward solutions. Funding for this is critical, especially the early funding that comes from philanthropy and foundations to foster those ideas through academic research before they are more fully developed with federal funding and eventually tested and brought into production with the help of venture capital and pharmaceutical companies.”

    This is precisely why AMDF recently provided financing for the 5th Biennial International Symposium on AMD, held at Harvard in October. The two-day event brought together more than 270 AMD researchers in a series of deep-dive, panel discussions to promote potential collaborations. Some of the world’s most established AMD scientists shared their knowledge with younger investigators and challenged them to consider additional areas of inquiry.  AMDF had the opportunity to conduct interviews with AMD thought leaders, which will soon appear on the AMDF web site.

    AMD is a complex disease, and its prevalence is approaching epidemic proportions.  Already, there are 10,000 U.S. baby boomers turning 72 every single day and the risk of having AMD has reached 30 percent between the ages of 65 and 75. As a society, we have to acknowledge that this is a problem.  At AMDF, we are taking a multi-faceted approach toward solving it.

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  • New Proposed Bill Could Drive $1 Billion to Eye Research Over 4 Years

    D.C. Financial Analyst, Karen Petrou, and founder of Federal Financial Analytics may have designed a solution to getting big investors behind a stage of research that is so hard to fund, it has been dubbed the “Valley of Death” of research by some.

    We interviewed Karen to talk about the bill. You can listen to the interview below, and/or read the transcript below.

    Interview Transcript

    This is Jennifer Williams with the American Macular Degeneration Foundation (or AMDF), and today I’m talking with Karen Petrou, founder and managing partner of Federal Financial Analytics in D.C. about her brainchild aimed at funding a critical juncture in eye research. This bill, introduced into the Congress in July of this year (2018) is called the Faster Treatments and Cures for Eye Diseases Act.

    Thank you so much for speaking with me today Karen.

    I’d like to understand better what you do with your firm Federal Financial Analytics. How you got into this field? How long you’ve been in the field, and in layman’s terms, what is it exactly that you do?

    K: Well, my firm, Federal Financial Analytics, or FedFin for short, has been in business in one or the other since I started it in 1985. And we analyze complicated, as most of them are, legislative and regulatory proposals in the U.S. and the global arena to identify their strategic and policy implications for the largest financial services firms in the world. So it’s a technical practice that focuses on finance and that’s the reason why I started thinking about Eye Bonds (1:32) with my husband who is also, you know, a decade long expert in financial analysis, and what we call engineering, building financial instruments to accomplish critical goals.

    I sit on the board of the Foundation Fighting Blindness and when I learned in the course of one of its meetings about the difficulties getting venture capital and private money beyond the foundation’s resources to support critical early stage research I came home and said to Basil that we need to use our knowledge and our firm’s resources to figure out a solution, and that’s the new legislation. (2:15)

    J: I know that you’re a frequent contributor on NPR’s Marketplace, but what many people who haven’t met you who may have only heard you on the radio is that you yourself have significant vision loss. Can you just give me a little background about that?

    K: That’s right. And of course it’s not relevant for my practice or my day to day life, because I like to think that our clients call on us for my brain. They’re in big trouble if they call upon me for my vision. I have a form of Retinitis Pigmentosa. The way that it affects me is not all that different from age-related macular degeneration in that I lost my central field vision first and have remaining, if now very limited peripheral vision

    J: As you said, your clients aren’t looking to you for your vision, they’re looking to you for the work that you do, but for a lot of people with vision loss, that vision loss can be an obstacle to continuing to work, and just really quickly, what are the tools and the technologies that you use to continue to do your work, so that your knowledge can be the focus?

    K: It was a lot harder when I started in the mid 80’s because I had lost my reading vision and there was really no computer technology then. Now with the screen reading software, both through, I use a program called Jaws on Microsoft and also voice over on my iPhone, it’s really eliminated many of the barriers between being able to read document, write them, and analyze them in-depth. I just go through thing, some people think remarkably quickly. I’m always relying on the screen reading software which has been a terrific assistance. I also rely on my guide dog for mobility and she’s a great aid to getting anywhere I need to go on my own.

    J: And what’s her name?

    K: Her name is Erica.

    J: Erica, oh that’s wonderful.

    J: Ok, so let’s talk about the Eye Bonds Bill. You talked a little bit about how you ended up creating it, but can you go a little more in-depth into what it is exactly and again in laymen’s terms for people who don’t have a background in finance or these complicated models. We’re there any inspirations for the model? How did you come up with it?

    K: Well, I came up with it because like all the members of the AMDF, retaining vision and saving vision is important to my husband and to me. We tried for a while to think about a way to add to the resources your foundation and the Foundation Fighting Blindness put into early stage research, but clinical trials where you start taking tested, proven, basic research and trying it out on people is very, very expensive. And early on, it’s quite risky. So we started to think about, how do you encourage private funds. Not venture capital, not big bio-pharma, because they only come in at the END of the clinical trial process. How do we get more up-front money so that all of the great science your foundation, the Foundation Fighting Blindness, and the National Eye Institute (NEI) among others funds doesn’t die, not because it’s unsuccessful, but just because there’s no money to move it forward.

    We came up with the idea that in HR5421, The Faster Cures and Treatments for Vision Act the concept of a limited federal guarantee so that private investors, likely really large insurance companies and pension funds would purchase packages of loans or other extensions of funding to eligible researchers.

    The National Eye Institute would pick the projects so we know they’re the best of the best and they would pick them across the spectrum of vision loss and blinding disorders including, of course, age-related macular degeneration and retinitis pigmentosa.

    Once these packages are put together, bonds would be sold into the investment market and a federal guarantee of up to 50% of the dollar amount of the bond would ensure that the private sector investor wasn’t taking more risk than they were, or right now are willing to take in an area that’s never been tried before. 

    J: Can you repeat, who would be investing in these?

    K: It wouldn’t be any of us. We don’t view these as the kind of investments where you could go to your mutual fund or broker or retirement plan and say I want to buy an eye bond. These would be instruments designed for large investors, such as insurance companies and pension funds.

    J: And so this is going to cover, I’ve heard it referred to as the ‘Valley of Death’ of research. So you have the early discovery research which is typically happening in universities and that’s usually funded in large part by the government and in the case of eye research it would be the National Eye Institute which is an arm of the National Institute of Health and also foundations like us. And then once it gets to clinical stages, you have three stages of clinical research. 1, 2 and 3 and it’s the stages 1 and 2 where the funding sort of drops out. 

    K: That’s right, even a little bit before, there’s a muddy area before you get to the Valley of Death. Late stage basic, pre-clinical and we see eye bonds starting there and it’s especially again, phase I, phase II, and even early III, it’s just where there’s good science and no money, that’s the goal here.

    J: And can you explain why the funding drops out at that point? What is your observation about that?

    K: The funding drops out because the analytical dimensions, the way financial institutions normally think about risk are very complicated. You’re going to make a decision about investing in early stage research you’re definitely taking a lot of risk and you have to know a huge amount to do that. And where the real big money is in insurance companies, pension funds, some more what we call institutional investors, they don’t invest in that kind of scientific knowledge base. Venture capital companies do, and big bio-pharma, of course, has it, but they can only take a certain amount of risks. So they like to see which projects have made it through phases 1 and phases 2 and then they pick the ones they like the best towards the end of that phase to move forward.

    And sometimes because their decisions are really based not on how good the science is, even though that’s important, but on how many patients, how much money they can make. Treatments and cures for orphan populations, small populations of patients, like me and others with certain vision impairments, some patients with age-related macular, you may not get that later stage funding from venture capital or bio-pharma because, even though the science is good, and there’s a very good chance of a really effective treatment or cure, there’s not enough money in it. 

    J: Now foundations, they’re not typically going to have the big money to spend at those stages but why does the government funding drop out at that point, in your opinion?

    K: The opinion is clear from the law. The government funding drops out because the United States, unlike, by the way, Europe and Japan and many other countries, we here have a strong policy, or political commitment to having the government fund only basic science. There’s a lot of concern that if the government gets into this later stage bio-medical research, it might compete with the private sector or crowd it out. So our model in bio-medical research, as it is in many other areas, is a very tightly contained role for the federal government. And for vision research, that is really only basic. 

    J: Ok. And so, the way that I’m understanding this, from what I’ve read about it, is that what reduces the risk for investors here is that you’re going to have multiple projects packaged into one bond and that’s essentially how bonds work. And it’s somewhat been compared to the mortgage packaging model, which of course doesn’t have a good reputation in the general public opinion at the moment because of it being such a large factor in the economic down-turn not too long ago. But I understand that you have written in things into this bill that would lower the risk of that happening with this. Can you talk about that?

    K: It’s very similar. It’s what’s called portfolio diversification. You put a variety of things into a single financial instrument is a very well proven way of reducing risk. It didn’t work in some of the mortgage backed securities during the crisis because they weren’t in fact risk-diversified. The riskiest portions of the market, the so-called sub-prime mortgage backed securities weren’t diversified, they were hugely risky. And it was THEY that then sparked the rest of the financial crisis, not old, conventional, tried and true portfolios of far more stable and secure mortgages. So we know how to do good diversified pools of bonds and the legislations is carefully drafted to ensure that eye bonds recognize that history and adhere to it. 

    J: One of the exciting things when I was reading about the eye bonds bill is that there’s no risk, or there’s no burden to the taxpayer.

    K: Well, we hope not. I’m sorry, there’s always risk to the taxpayer when they have a 50% guarantee, and that’s why we go up to a 50% guarantee, and that’s why this is a pilot program. The eye bond legislation would fund a billion dollars of research in vision, but we have checks and balances and controls along the way because that’s a half a billion dollars of potential taxpayer risk. We have a lot of other controls in there including ways of safeguarding the taxpayer that we budget experts believe that it will cost the taxpayers very little to nothing. But nobody’s ever done this before. So we don’t THINK it puts the taxpayer at risk, but we won’t know til we try.

    It’s important to note that if this works, it will work for other diseases and disabilities , particularly those with diverse patient populations like cancer or Alzheimer’s. This is an experiment with vision. If we can raise a billion dollars I think we’ll cure a lot of vision impairment and blindness, but we’ll also prove that private capital can be mobilized to treat and cure many other diseases and disabilities. (15:?)

    J: Yeah, and that was the next thing I was going to ask you, is that when you were talking about this being a pilot program, so you started with vision because this is something that affects you personally but this can go much beyond that if this works well.

    K: Absolutely, our plan is to try these as eye bonds and then if they work we believe it will found what we’re calling a, quote, bio-bond market. There’s something like this called green bonds which fund hundreds of billions of dollars of environmental clean up and sustainable energy development, and we’re following that model to try to speed treatments and cures across the spectrum of disease and disability.

    J: Yeah, so it sounds exciting, what has been the reception so far for this and who else, who’s signed on as co-sponsors of this, where do you have support coming from, you know, what obstacles are remaining at this point?

    K: The response has been enthusiastic but we’re at the end of the current Congress and we’re right in the middle of the election season. The legislation is HR61-21 and you all can find it by looking on the congressional record and a lot more easily go to www.eyebonds.com and you can find the legislation, more information about it, and importantly also, how to call your member of congress and ask him or her to co-sponsor it. The Foundation Fighting Blindness has done this and generated a lot of grassroots support which in turn has led to several key co-sponsors, both Republican and Democratic. And that’s our goal. In this congress we really want to generate interest and enthusiasm so we have a very strong platform for action to final passage next year in the new congress.

    J: So yeah, you said next year. WHEN next year would this be coming up for approval?

    K: The congressional process is such that you have to introduce legislation, then it goes through hearings and then it’s impossible to tell at this point what the timing is. We will certainly move it as fast as we can once it’s re-introduced in 2019. Our goal first and foremost is to get a lot of support in 2018 to power us into 2019 and then we’ll adopt a new strategy with a new congress – the leadership may change – party control may change and we’re going to, with our great team of pro-bono lobbyists make the best call we can to power this through as fast as we can next year.

    J: So this is where the grassroots community can come in. So the macular degeneration community, every single person listening to this could contact their representatives and say that they support this bill and they want their representatives to support this bill. Is that right?

    K: That’s right. Could, and I hope WILL because it does make a big difference and again you can find out how to do it as well as if you’re not sure who your member of congress is there’s a site on the eyebonds.com website that you put in your address and it will tell you who your member of congress is and then make it easy to write or call them.

    J: Oh, that’s excellent, thank you. And you mentioned, both earlier in this conversation and elsewhere that you believe without a doubt that eye disease can be cured in your lifetime if something like this passed, um, and cure is a strong word in terms of medical conditions and science, I mean we have come up with cures for some things, but a lot of times it really comes down to prevention and treatment, but I’m interested to hear why you feel so strongly that we’re close to cures, and what do you think are the most promising developments in research that you’ve been seeing?

    K: Well I feel really strongly about this because I sit on the, as I said, the board of the Foundation Fighting Blindness and I see a lot of the research we’ve been funding for years proving that it prevents or in some really exciting cases, reverses severe vision loss. I sometimes joke, we have a lot of mice who can see the end the maze. The real challenge now is getting what fixed the vision in the mice into people. That’s the missing link. Because the research is so advanced and it’s moving unbelievably quickly, at least in retinal degeneration for AMD and retinitis pigmentosa, scientists tell us they expect to make enormous advances and the more money, the faster and the better. So they’re extraordinarily optimistic and I’m guided by their views and hope we’re right.

    J: Yeah, we’ve been hearing that as well from scientists and I’m wondering, I mean research I think it’s really difficult for people to understand why research and treatments and cures take so long. But the research process is a long process. I feel like, or what I’ve been witnessing is that research that started 10 or 20 years ago is now starting to come into a fruition stage, so that’s the sort of exciting juncture that we’re at right now. Would you agree?

    K: That’s right, I would agree with that. I think it’s important to know that now that we’re at that juncture it takes about a hundred million dollars for EACH single cure to move forward. That’s where we’re at. We have great science but we’re stuck because the valley of death is huge and there’s just not enough money. There’s some money, your foundation, mine, and others but we need a lot more to really move things towards phase III and proof of safe, effective treatments and cures. We’re going to lose a lot of time and I think a lot of good science if we can’t generate more money to bridge the valley of death.

    And again the action message you brought out and I think that’s the most important thing. Get people understanding this and seeing how easy it is for them to make a difference. I know the Foundation Fighting Blindness, one of the reasons people are really excited, everybody wants to give money and support the cause but they’re really excited about something else they could do.

    J: Yes, I definitely think people want to feel empowered to move the research forward. So this is very exciting! Well, thank you so much for speaking with me today.

    Learn More About the Eye Bonds Bill at eyebonds.com