Who Are We?

General Description

Macular Degeneration Support is a world-wide non-profit public service organization founded by retired educator Dan Roberts. Its mission since 1995 has been to provide information and support for people who are affected by macular degeneration and similar retinal diseases. Known more simply as MD Support, it is based on the Internet and also offers a public awareness program designed to reach people who are without Internet access. The founder and most of the organization's volunteers are visually-impaired themselves. Their work is supported and guided by a 12-member advisory board made up of leading professionals in the field.

The organization's web site receives over 4 million hits annually. The site contains in excess of 850 pages, including over 1,600 links to agencies and organizations for the blind, state agencies, vision centers, and dealers in low vision devices, audio books, and large-print reading materials. Also on the site is a low vision bookstore, an informational library with more than 120 articles written for the layperson, a comprehensive glossary of ophthalmologic terms, educational photo essays, and an Internet portal to 25 other MD-related organizations. In addition, MD Support hosts an email discussion group (MDList) and an Internet message board (MD Forum).

MDList includes more than 350 patients, family members, and doctors worldwide, all of whom share email messages about latest research, current treatments, and solutions to the challenges of daily living. More than a dozen transcripts of discussions between these subscribers and low vision professionals are available for reading on the web site, as are archives of opinions about most low vision devices and archives of personal experiences with virtually every treatment and procedure available to patients with macular disease. Finally, there is an entire section on the site dedicated to essays, poems, and personal stories by patients themselves.

This trove of information and support has become an important lifeline joining thousands of people around the world through Internet technology. A large segment of the senior population, however, has been left behind in the transition. Realizing the scope of the problem, MD Support maintains a public outreach program for people who do not have computer access. The entire library is available in large-print hard copies, and fully-narrated videos containing the most vital information are sold at cost.

The organization also maintains the International Macular Degeneration Support Group, a global network of support groups hosted by retirement centers, senior organizations, clinics and libraries. Through monthly Internet webcasts, MD Support is reaching thousands of previously "unconnected" seniors with the information and resources necessary for living successfully with central vision loss. The programs are archived for free viewing in the MD Support Audio/Visual Library. This project was initiated in part through receipt of the National Eye Institute's 2006 Healthy Vision Community Award, and it continues under generous corporate sponsorship.

Attendance at support group meetings, of course, depends upon transportation. To address that need, MD Support has created a freely-accessible national database of alternative transportation services for the vision-impaired. More than 1560 services from all 50 states have been entered so far, and that number is quickly growing.

As a result of a need for representation of the low vision population in the marketplace, MD Support is also a leading consumer advocate organization. The organization advises and consults with manufacturers of sunglasses and lighting products in order to ensure safety and consideration of the special needs of patients with retinal dystrophies. Public education is a major part of that effort, so MD Support works with leading organizations such as the American Academy of Ophthalmology and the American Optometric Association to help raise awareness in both the professional and the lay community.

The mission of MD Support is to make it as easy as possible for people to educate themselves about loss of vision and to meet the daily challenges resulting from it. This kind of access will not cure retinal disease, but it has proven time and again to help relieve the emotional trauma that often accompanies it. As an extension of this global effort, MD Support is an active member of AMD Alliance International, a network of over 55 similar organizations representing more than 20 countries. This kind of open communication and cooperation is key to the success of MD Support since its founding over a decade ago.

The organization's web site was recognized as the 2004 recipient of the "Distinguished Service Award" by the Low Vision Rehabilitation Section of the American Optometric Association. The AOA describes the award as "the highest honor given by the LVRS to an organization or individual for contributions to low vision care and distinguished service to the general welfare of the public."

Funding

MD Support is funded by private donations, corporate and governmental grants and fund-raising efforts. The organization is a public charity operating under section 501(c)(3) of the IRS code, with all contributions going directly into its public service programs and operating expenses.

MD Support's most recent financial report, along with a comprehensive description of the organization and its activities, is published at www.guidestar.org.

Confidentiality

Confidentiality of data relating to individual visitors is respected by this web site, with permission obtained for disclosure of any such information. The web site owner undertakes to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where this web site is located.

Advertising

This site contains no advertising, except where the purpose is to provide a pertinent service or raise operating funds for MD Support, and such advertising is clearly defined.

Disclaimer

It is the general policy of MD Support and its director to offer no opinions on any aspect of macular degeneration, to include treatments, surgical procedures, pharmacological products, nutrients, or commercial products. Rather, all information is published on the web site for the purpose of allowing visitors to make their own educated judgements. Opinions expressed by individual contributors to the site do not necessarily reflect the views of the director, staff, volunteers, or professional advisory board members of MD Support.