Warm winter greetings!
As another year comes to a close, I want to personally thank you for your continued support, interest, and engagement in the work of the American Macular Degeneration Foundation.
Whether it’s taking part in a survey, making a donation, helping us spread awareness, sharing your concerns with us, subscribing to our print newsletter, or subscribing to these email updates (you can unsubscribe at any time by clicking unsubscribe at the bottom of this or any email from us), your participation not only makes our work possible, but inspires us to expand our efforts.
Through the generosity and support of the AMD community in 2019, we have added to our grant-giving, grown our collaboration with other organizations, taken a seat at important meetings for the eye research community, and brought your voice to Washington D.C. to advocate for increases in eye research funding, along with our continued support of major research (see more details after the end of this email - keep scrolling for AMDF 2019 in Review).
On this last day of 2019, would you consider becoming a monthly donor? Monthly donors share a commitment of steadfast support of AMDF’s mission to offer hope and resources to the AMD community through education, awareness, and research. And we have much planned for 2020.
To become a monthly donor, click the button below, choose or fill in your monthly amount, and select ‘Monthly Donation’ under ‘Type of Donation’.
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Your donation today allows us to support ongoing research as well as new, promising research, and to continue to be a voice for you and the entire community of people with AMD. Your support is essential to this work. |
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Wishing you a wonderful New Year!
Chip Goehring, AMDF President, and the Team at AMDF
American Macular Degeneration Foundation
www.macular.org
413-268-7660
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AMDF 2019 in Review
New Grants
In 2019, AMDF significantly expanded its Grants Program. With Research to Prevent Blindness (RPB), we co-funded two RPB/AMDF Catalyst Awards for Innovative Research Approaches for Age-Related Macular Degeneration.
- Sabine Fuhrmann, PhD, Associate Professor, Vanderbilt University Medical Center, Nashville, Tennessee, is examining the potential of retinal pigment epithelium (RPE) cells to regenerate in mature mammalian eyes. Healthy RPE cells support the functioning of photoreceptor cells, while their degeneration leads to progressive, chronic AMD.
- Aparna Lakkaraju, PhD, Associate Professor, University of California, San Francisco, School of Medicine, is evaluating 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.
Through travel grants, we made it possible for two outstanding young researchers to advance their careers by attending the 2019 Annual Meeting of the Association of Researchers in Vision and Ophthalmology (ARVO).
- Saghar Bagheri, MD (a Clinical Research Fellow at Mass. Eye and Ear under the mentorship of Demetrios Vavvas, MD, PhD) presented findings which could revolutionize anti-VEGF treatment for late AMD and preserve the sight of millions of people. She found that AMD patients who don’t seem to respond to anti-VEGF injections, or who respond poorly, likely do respond, but earlier and for a shorter period of time, requiring earlier return visits to the clinic and more frequent treatments at first.
- Shun-Yun Cheng, a 4th year PhD student at University of Massachusetts Medical School, presented results from her study in which she is proposing a new way of thinking about the origins of AMD: that photoreceptors may initiate damage to the layer of cells that nourish them (the RPE), rather than the other way around, as is currently accepted. Her study opens new therapeutic opportunities.
We continued our seven-year partnership with Fight for Sight (FFS), co-funding AMD-focused Summer Student Fellowships. With these awards, we encourage early-career AMD investigators to enter and stay in the field.
- Tran M. Tu, University of California, Davis, is using advanced imaging techniques to determine the effectiveness of a one-time-injection gene therapy to suppress the development of the leaky blood vessels that cause sudden and dramatic vision loss in the later stages of wet AMD.
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- Kalila Walsh, University of California, Santa Barbara, is seeking to develop a new stem cell treatment for the dry form of macular degeneration using a method which would replace animal products with chemicals, paving the way for a cheaper, faster way of making these cells available to patients.
Grantee Updates
In 2018, we selected Kip Connor, PhD, Department of Ophthalmology, Harvard Medical School, to receive an AMDF Prevention Award for research focused on the body’s innate defense systems. He is studying factors that cause the body’s immune system inflammation response to go awry in AMD. In 2019, citing AMDF support, he published important preliminary data implicating retinal microglia (scavenger cells) in the protection against neovascular disease (like wet AMD). His work earned him the May 14, 2019 cover of the prestigious Proceedings of the National Academy of Sciences.
In 2017, we presented the first AMDF Breakthrough Award to Neena Haider, PhD, Department of Ophthalmology, Harvard Medical School, for research focused on disease pathway interventions. Her proposal included developing a gene therapy utilizing a master gene that controls a cascade of events in the development of AMD. On September 18, 2019, the U.S. Food and Drug Administration (FDA) granted orphan drug designation for OCU400, the first gene modifier therapy, based on Haider’s work. The therapy has the potential to be broadly effective restoring retinal integrity and function across a range of genetically diverse, inherited retinal diseases. With the AMDF grant, Haider’s lab is already developing gene modifier therapies for AMD using similar approaches.
This past November, AMDF President Chip Goehring and AMDF Secretary Paul F. Gariepy travelled to the Cleveland Museum of Art, in Ohio, to help celebrate the presentation of the Future Vision Foundation’s prestigious Future Vision Award to long-term AMDF grantee, Johanna Seddon, MD, ScM, Department of Ophthalmology & Visual Sciences, University of Massachusetts Medical School. Her AMDF-supported, ground-breaking findings of AMD-related genes and their interactions with environmental factors (nutrition, smoking, body mass, etc.) have formed the basis for today’s early AMD management. Dr. Seddon is also co-author of AMDF’s “Eat Right for Your Sight,” a science-based cookbook for healthy eating to preserve vision.
Advocacy
AMDF travelled to Washington, D.C., several times in 2019 and met with health legislation leaders to raise awareness of the growing AMD epidemic and the need for increased medical research funding. Our visits were coordinated with the National Alliance of Eye and Vision Researchers (NAEVR), upon whose deep knowledge of the legislative process we rely in order to create our specific ask for NEI funding.
In November, AMDF joined other nonprofits in the AMD community in an all-day workshop hosted by Novartis in New York City, to find common ground on issues of concern to those affected by AMD. As part of our presentation, we shared findings from our survey of AMD patients’ experience at diagnosis, which pointed to gaps in patient/practitioner communications. The group’s ongoing objective is to create an initiative that all participants could develop and help roll out to improve quality of life for AMD patients.
Through an invitation from the American Academy of Ophthalmology (AAO), AMDF has also been exploring joining a new coalition of low vision nonprofit and low vision assistive device manufacturers who are interested in reversing the current Medicare exclusion that denies reimbursement for visual assistance technology involving a lens (including glasses!). Various forms of this technology can have a significant beneficial impact on quality of life for AMD patients, and it can be quite pricey, so we are interested in influencing a change in benefits or a change through legislation.
Vision Community Engagements
Throughout 2019, AMDF sought to build alliances with other organizations in the vision community by participating in conferences and other gatherings.
- At the 2019 Annual Meeting of the Association of Researchers in Vision and Ophthalmology we met with other AMD nonprofits, pharmaceutical companies with strong advocacy functions, early AMD detection device manufacturers and researchers.
- We attended the annual National Eye Summit, in D.C., and met with thought leaders on potential projects to improve quality of life for AMD patients.
- We again joined the annual Convening of Nonprofit Vision Research Funders, in D.C., and established communications with several possible future partner organizations.
- We joined the Novartis-hosted nonprofit CEO dinner in D.C., where we met with advocacy leaders from nonprofits in other disease categories.
- We supported the NAEVR-coordinated Congressional Briefing on AMD, where our patient liaison, Sydney Torrey, told the gathering of health legislation support staffers, young vision scientists, and at least one member of Congress about the realities of living with AMD: “In my role with The American Macular Degeneration Foundation I speak with many AMD patients. I do my best to calm their anxieties and address their needs. But, to be honest, sometimes I have no answer other than to listen.”
- We became a member of the Vision Research Messaging Group, coordinated by Research to Prevent Blindness, through which we are participating in the development of a national digital messaging campaign to focus attention on the urgent need for sustained, increased federal funding for eye research.
Partnerships
AMDF has been seeking and establishing partnerships in pursuit of our mission.
- We have been working with Platform Q to create “trustworthy digital education for clinicians and families that help them make informed, empowered decisions and see the best possible results” for those affected by AMD. During our recent visit to their offices we discussed funding mechanisms for this expansive project, which we hope to roll out in 2020.
- With Prevent Blindness, the leading eye health and safety organization in the U.S., we are in early discussions to help them recruit candidates for a program to empower volunteers to be engaged in both individual and national eye health by training them in advocacy leadership.
Special Projects
The AMDF-supported Vision and Art Project (VAP) continued to develop new artist profiles in its exploration of the “boundaries between vision, sight and the making of art.” In addition to artist profiles on kinetic sculptor Tim Prentice and watercolor artist Milford Zornes, the VAP completed a film about Robert Andrew Parker, “A Is For Artist” and screened it at The Cornwall Library, in Connecticut, in January 2019.
The VAP also brought Robert Andrew Parker’s recent work to the attention of the Art Institute of Chicago and provided them with materials for a spread featuring him in their spring 2019 School of the Art Institute of Chicago magazine, which is distributed to 37,000 alumni, board members, leaders of cultural institutions, curators, and leaders of higher education institutions, creating the opportunity for AMD awareness to spread to a large audience of people who otherwise might not think about macular degeneration.
Visit the VAP website visionandartproject.org to learn more about their work.
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American Macular Degeneration Foundation
Northampton, MA01061
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