SupportSight Boston, Massachusetts

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First Meeting for MVRF SupportSight of Boston

June 26, 2004

Ophthalmic Consultants of Boston, Tufts New England Medical Center and the Macula Vision Research Foundation (MVRF) conducted SupportSight, the first-ever national series of support group seminars for patients suffering from macular degeneration and their families in the Boston area on June 26. The event was attended by more than 200 people and was held in the AMC Chestnut Hill Theatres in Chestnut Hill.

Program
The program began with Caroline Baumal, M.D. of Tufts New England Medical Center providing an overview of the disease, with a presentation titled "What is macular degeneration?"

The next speaker, Trexler M. Topping, M.D., of Ophthalmic Consultants of Boston, discussed options for the treatment of macular degeneration. Currently there is no known cure for macular degeneration, but there are therapies to halt the progression of the disease, and Dr. Topping discussed the status of each of these treatments.

An update of the use of vitamin therapy (AREDS) for the treatment of age-related macular degeneration was provided by Lisa S. Shocket, M.D., of Tufts New England Medical Center.

Bonnie Niebuhr, a registered nurse, gave a thoughtful presentation on how she and her family have learned to adapt after her mother, Marilyn was diagnosed with macular degeneration. Ms. Niebuhr noted, "I use the word adapt, rather than cope, because I think coping means doing what you need to get by, while adapting is more positive, and means identifying strategies to improve your quality of life." She touched on strategies she and her family have used, and stressed that a supportive network where you can share information and education is critical to learning to live with macular degeneration.

Lea S. Bramnick, Executive Director, Macula Vision Research Foundation discussed the Foundation and its history and commitment to research and support for those with macular degeneration.

A lively and informative question and answer session followed each speaker's presentation.

Age-related Macular Degeneration
Age-related macular degeneration is the leading cause of blindness and visual impairment in American adults over 60, but the nearly 15 million people affected are often reluctant to discuss their condition or ask for help. There is a great need to raise awareness about macular degeneration -- to bring this condition to the public eye.

Support Group Research
Healthcare research has shown that support groups can be very helpful to people who suffer from diseases such as macular degeneration. "Seminars like SupportSight provide an opportunity for people with similar concerns and problems to share solutions and suggestions. There is no better coping mechanism than enlisting the support of others in the same situation," said Trexler M. Topping, M.D.

Macular Degeneration
Macular degeneration causes deterioration of the macula, resulting in the loss of sharp, central vision. An impaired macula prevents a person from clearly seeing objects straight ahead, such as words on a page, television or the faces of loved ones. At its worst, sufferers of macular degeneration have only very limited peripheral vision.

Currently, there is no cure, but there are treatments available and more in development that work to halt the progression of the disease. "A lot of resources are being funneled into various aspects of macular degeneration and positive results are benefiting patients and their families," Dr. Topping said.

Macula Vision Research Foundation
Macula Vision Research Foundation gives 100 percent of every dollar raised to research and public education programs, as the administrative costs of the Foundation are underwritten. It has been estimated that with seven adults turning 50 every minute, macular degeneration may become the disease of the twenty-first century - by 2025, more than 23 million adults are expected to be diagnosed. Although there is no known cure, recent progress in research provides great hope for future discoveries into the cause, prevention, treatment and ultimately the cure for macular degeneration.

"I was shocked at how little people know about this issue, which is becoming an epidemic with the growth of our aging population," said Herbert Lotman, Founder, along with his wife, Karen, of the Macula Vision Research Foundation. "This organization was founded to find the cure for this disease and to save the sight of the millions affected. This can and will be done, but only through fund-raising support for critical research, some of which were discussed at this seminar. We are also aware of the great need for support for patients with macular degeneration and their families."

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Contact

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SupportSight

Macula Vision Research Foundation SupportSight
Five Tower Bridge
300 Barr Harbor Drive, Suite 600
West Conshohocken, PA 19428-2984

Please call Lea Bramnick
Toll free 1-866-462-2852
1-866-4-macula
Email: lea@mvrf.org
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