Age-Related Macular Degeneration Resources

By Lylas G. Mogk, M.D. Edited by Maureen A. Duffy, M.S., CVRT

Publications, Organizations, and Support Services for Adults with Age-Related Macular Degeneration (AMD)

Since increasing numbers of adults and older adults experience various forms of AMD, there are many consumer groups, online forums, and publications that provide ongoing information, resources, and support.

Books

Blindness: Coping with Vision Loss from the Perspective of a Caregiver by Ed Henkler
Was Blind, But Now I See: Life stories (and lessons) from my battle with age-related macular degeneration by Jim Hindman
Out of Sight, Not Out of Mind: Personal and Professional Perspectives on Age-Related Macular Degeneration, by Lindy Bergman and edited by Jennifer E. Miller, Esq.
Out of the Corner of My Eye: Living with Macular Degeneration, by Nicolette Pernot Ringgold
Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight by Lylas G. Mogk, M.D. and Marja Mogk, Ph.D.
The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed by Daniel L. Roberts
Book: When You Can’t Believe Your Eyes | Vision loss and Personal Recovery by Hannah Fairbairn

Major Associations and Organizations by and for People with Macular Degeneration

AMD Alliance International: Provides a summary of all current and proposed treatments for wet and dry AMD, in addition to information on early detection, timely treatment, comprehensive rehabilitation and support services, and prevention strategies.
The American Macular Degeneration Foundation: Works for the prevention, treatment, and cure of macular degeneration through raising funds, educating the public, and supporting scientific research. Publishes “In the Spotlight,”a quarterly newsletter that is provided for a $25.00 donation to the Foundation.
Bright Focus Foundation: Provides the Macular Degeneration Toolkit with information about macular degeneration, its symptoms and risk factors, treatment options, and how to live with, or care for, someone with AMD.
Eye Care for Older Adults: Educational resources from the American Academy of Ophthalmology (AAO) for eye care practitioners, including audio podcasts, resident lectures, and helpful resources.
EyeSmart: A program of the American Academy of Ophthalmology (AAO), which, in partnership with EyeCare America, offers Ask An Eye M.D. Through this feature, you can get your eye care questions answered by a volunteer ophthalmologist.
Facts about Age-Related Macular Degeneration: Definitions, treatments, and helpful resources from the National Eye Institute to help patients and their families search for general information about age-related macular degeneration.
The Macula Vision Research Foundation: A national non-profit organization that provides funding to scientists and clinicians to study retinal diseases. MVRF shares news about breakthrough research and treatment options via email, website, and a quarterly newsletter.
Macular Degeneration Association: Promotes awareness of visual diseases and disorders, publishes scientific research findings, advocates for scientific research and the rights of people with visual impairments, provides educational videos, and publishes a quarterly newsletter with information on treatments, findings, information, and helpful tips.
Macular Degeneration Foundation, Inc.: A non-profit organization, founded by an AMD patient, to inform consumers and support research. Publishes “The Magnifier,” a free newsletter distributed via email and regular mail that highlights breaking news, clinical trials, and online resources.
Macular Degeneration Partnership: Provides an AMD warm line for support. Provides information and resources on experimental treatments, clinical trials, and macular degeneration resources, as well a free AMD Toolkit that contains a large print information packet on AMD, low vision rehabilitation, nutrition, and a magnetic Amsler Grid.
Macular Degeneration Support: Provides information and educational publications on AMD and medical advances, the International Low Vision Support Group, extensive online resources, monthly webcasts, and a public awareness program to reach individuals who are without Internet access.
WebRN – MacularDegeneration.com: A comprehensive website on macular degeneration, including prevention, treatment, diet and nutrition, clinical trials, and low vision devices and resources.

Medical and Anatomical Definitions and Illustrations of Macular Degeneration

To help family members and friends better understand the visual and functional effects of age-related macular degeneration (AMD), Macular Degeneration Support has created an online simulation gallery, entitled Through Our Eyes: How People with AMD See. Read more about the topic of low vision, blindness, and visual acuity. For a definition of medical and anatomical terms, see the Glossary.