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About Us

General Description
Internet Presence
Public Outreach
Advocacy
Involvement
Recognition
Funding
Confidentiality
Advertising
Disclaimer
Director
Professional Advisory Board
Associates


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 17-member advisory board made up of leading professionals in the field.

Internet Presence

The organization’s web site receives nearly 5 million hits annually. The site contains in excess of 1000 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 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.

Public Outreach

The organization also maintains the International Low Vision 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 created a freely-accessible national database of alternative transportation services for the vision-impaired. More than 1570 services from all 50 states have been entered so far, and that number is quickly growing.

Advocacy

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.

Involvement

MD Support partners with numerous other low vision organizations on common projects, and it is represented at all major conferences and seminars, including annual meetings of the American Academy of Ophthalmology (AAO), the American Optometric Association (AOA), the Association for Research in Vision and Ophthalmology (ARVO), the Low Vision Research Study Group (LVRSG), Envision Conferences and the International Conference on Low Vision. In addition, the MD Support director speaks on various topics to support groups, national conferences, and other low vision events throughout the country.

Recognition

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.


Director

Dan Roberts, Director, MD Support

Having retired from a half century as a teacher, author, composer, theatrical director, and musician, Dan Roberts now dedicates himself full time to helping others learn about and live with low vision. Because of his own need for support and information about visual impairment, he founded MD Support in 1995 and has since become a leading patient advocate, industry consultant, and low vision educator.

In addition to heading MD Support, he is founding director of the International Low Vision Support Group, Editor-in-Chief of Living Well With Low Vision at Prevent Blindness, resource consultant for MD Foundation, and Vision & Eye Expert with eCare Diary. He is also a member of the Genetic Alliance and the Fiduciary Board and Patient Advisory Board of International Macular and Retinal Foundation, and he is a consultant for pharmaceutical companies, lighting manufacturers, and dealers in protective eyewear. He is the creator of LowViz Guide, an indoor wayfinding application for attendees at low vision conferences.

Dan is the author of The First Year–Age-Related Macular Degeneration (Marlowe & Co., New York, NY, 2006) and a contributing author to Occupational Therapy Intervention for the Older Adult With Low Vision (American Occupational Therapist Association, 2010). He has written over 100 articles for various publications about low vision and several books specifically designed to bring the resources of the Internet to thousands of otherwise unconnected people with visual impairment. He is the developer of LowViz Guide, an indoor way-finding application for use by attendees at low vision conferences in the U.S.

He is a graduate of the University of Missouri with a master’s degree in music education. He is the recipient of the 2004 Distinguished Service Award presented by the American Optometric Association, and his organization was awarded the National Eye Institute’s 2006 Healthy Vision Community Award for innovative approaches to vision-related health education.

Dan married Christina while serving in the Air Force in 1968. They have three children and seven grandchildren.


Professional Advisory Board

The purpose of the professional advisory board is to provide information and feedback to (and at the request of) the director of Macular Degeneration Support. Presence on this board does not indicate agreement with, or the condoning of, all information posted on the MD Support web site, message board, or email discussion group. All communication should be sent todirector@mdsupport.org.

We are grateful to the following people for their generous contributions of time and knowledge:

Jeffrey Anshel, O.D., F.A.A.O.

Optometrist (Nutrition Specialist)
President
Ocular Nutrition Society
842 Arden Dr
Encinitas, CA 92024

Roy Cole, O.D., F.A.A.O.

Optometrist
Director of Vision Program Development
Lighthouse Guild
15 West 65th Street
New York NY 10023

K. Bailey Freund, M.D.

Ophthalmologist (Retina Specialist)
Vitreous Retina Macula Consultants of New York
519 East 72nd Street, Suite 203
New York NY 10021

Bryan Gerritsen, M.A., CLVT

Rehabilitation Specialist
Low Vision Rehabilitation Services
439 East 3100 North
North Ogden, UT 84414

Robert Hammer, B.Optom., M.Sc.

Optometrist
74 Menahem Begin Rd.
Petah Tikva IL 49732
Israel

Yu-Pin Hsu, M.S., O.T.

Occupational Therapist
New York Presbyterian Hospital
622 West 168th St
New York, NY 10032

Edward J. Huggett, Jr., O.D., P.A.

Optometrist
Chief of Low Vision Services
Low Vision Support
Tarpon Springs FL

Randall T. Jose, O.D., F.A.A.O.

Optometrist
Associate Professor
Center for Sight Enhancement
University of Houston College of Optometry
505 J. Davis Armistead Bldg
Houston TX 77204-2020

Joseph H. Maino, O.D., F.A.A.O.

Optometrist
Chief of Optometry & VICTORS rehabilitation program.
Kansas City VA Medical Center
4801 Linwood Boulevard
Kansas City MO 64128

Martin A. Mainster, Ph.D., M.D., FRCOphth.

Ophthalmologist (Retina Specialist), Physicist, Lecturer
Professor, Vice Chairman and Director, Macula Service
Department of Ophthalmology
University of Kansas Medical Center
Kansas City, Kansas 66160

Lylas G. Mogk, M.D.

Ophthalmologist, Author, Lecturer,
Chair of the American Academy of Ophthalmology Vision Rehabilitation Committee,
Chair of the Michigan Network for Visual Rehabilitation of Seniors,
Medical Director, Henry Ford Health System Visual Rehabilitation and Research Center (Grosse Pointe and Livonia, Michigan).

Angel Pacheco

Assistive Technology Specialist
Jewish Guild Healthcare
15 West 65th Street
New York NY 10023

Peter L. Sonkin, M.D.

Ophthalmologist (Retina Specialist), Researcher, Author
Retina Representative, American Academy of Ophthalmology Patient Education Committee
Diplomate, American Board of Ophthalmology
Member, American Academy of Ophthalmology and American Society of Retinal Specialists
Past President, Nashville Academy of Ophthalmology
Assistant Clinical Professor of Ophthalmology, Vanderbilt University
Tennessee Retina, P.C.
345 23rd Ave, N
Ste. 350
Nashville TN 37203

Janet S. Sunness, M.D.

Ophthalmologist; Medical Director, Hoover Rehabilitation Services for Low Vision and Blindness
Greater Baltimore Medical Center
6569 North Charles St. PPW 305
Baltimore, MD 21204

Ellen Troyer, M.T., M.A.

Nutritionist
CEO, Biosyntrx, Inc.
Executive Board Member, Optometric Nutrition Society
Member, Council for Responsible Nutrition
Member, Association for Research in Vision and Ophthalmology
Biosyntrx, Inc.
151A Riverchase Way
Lexington, SC 29072

Mary Warren MS, OTR/L SCLV, FAOTA

Director, Graduate Certificate in Low Vision Rehabilitation
Associate Professor, Occupational Therapy
University of Alabama at Birmingham
SHPB 340
1530 3rd Avenue South
Birmingham, Alabama 35294-1212

Wendy Strouse Watt, O.D.

Optometrist
17 Beaver Drive
DuBois PA 15801


Associates

We are proud to be actively associated with the following organizations in one or more outreach projects. We encourage you to visit their sites.

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