SupportSight

The Macula Vision Research Foundation Support Group’s Mission

The mission of SupportSight of the MVRF is to enhance the quality of life of the ever-growing population who are affected by or concerned with macular degeneration through public education programs, small support groups, the toll-free hotline (866-4-Macula) responding to the needs of patients, their families and loved ones, through question and answer sessions following public education programs, and printed and taped literature.

Macula Vision Research Foundation SupportSight Becomes National Support Group

In 2001, the Macula Vision Research Foundation announced the creation of SupportSight — the first-ever national series of support group seminars for patients suffering from macular degeneration and their families. More than 175 people attended the first meeting, in Cleveland, Ohio, in association with Retina Associates of Cleveland on December 1, 2001.

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. Nearly 60% of Americans have barely heard of the disease. 1 in 4 (25%) of Americans have macular degeneration. By the year 2030, it is projected that the number of people with macular degeneration will double and could affect as many as 42 million Americans. There is a great need to raise awareness about macular degeneration - to bring this condition to the public eye.

Our hope is that we can make the life journey with macular degeneration less solitary, and filled with greater knowledge, information and help.

SupportSight can now truly be seen as having national impact.

Cleveland, Ohio

Several chapter meetings have been held in 23 cities throughout the country. The Cleveland, Ohio SupportSight group, in association with Retina Associates of Cleveland has had more than 2,000 people attend its meetings. Lawrence Singerman, M.D., of Retina Associates of Cleveland, Ohio, states, “We are seeing an increasing number of patients diagnosed and new treatment options are under development every day. In order for patients to understand their disease and their future, education is vital.” Five regional support groups in the Cleveland city and suburbs have been created.

Response

The response has been overwhelmingly positive. People told us that they wanted and needed more information, that they had been looking for more time with their doctors to ask questions, and that they were interested in coming to future seminars. Successful seminars have taken place in Cleveland, Ohio; Austin, Texas; Tucson, Arizona; Los Angeles, California; Lexington, Kentucky; Manchester, New Hampshire; Chicago, Illinois; Houston, Texas; Fort Lauderdale, Florida; Washington, DC; Annandale, Virginia; Phoenix, Arizona; Livingston, New Jersey; Pittsburgh, Pennsylvania; Atlanta, Georgia; Detroit, Michigan; Boston, Massachusetts; and 8 locations in the Philadelphia region (Wynnewood, West Chester, Center City Philadelphia, Northeast Philadelphia, Elkins Park, North Wales, Voorhees, and Princeton.). A lively and informative question and answer session follows each speaker’s presentation.

Under the Red Umbrella

At the conclusion of each meeting, Lea Bramnick, Executive Director, of the Macula Vision Research Foundation, invites people interested in working with the Foundation to meet her “under the red umbrella” in the lobby. A dynamic, vibrant group of people in each city, named the Visionaries, is being formed.

Future

To date, over 12,000 people have attended SupportSight meetings in the three years of its existence. Currently, we are operating in 23 cities across the United States.

Support Group Research

Healthcare research has shown that support groups can be very helpful to people who suffer from diseases such as macular degeneration. “By holding seminars like MVRF SupportSight, people with similar concerns and problems have the forum to share solutions and suggestions which can boost confidence and enable people to cope in a better way with their loss of vision,” said Lawrence Singerman, M.D., Professor of Ophthalmology, Case Western Reserve University. The NBC affiliate in Cleveland featured stories about the seminar.

MVRF SupportSight seminars seek to help people with macular degeneration by participating in a national network of support groups with others who appreciate and understand their problems and then work together to find ways to solve them. “When I learned about large-print checks, special computer screens, etc., it was very helpful. But, most importantly, when I met people who understood what I was going through, it greatly enhanced my life,” said Mary Betty Roeder, a macular degeneration patient. “We’ve learned that talking with others is of great benefit,” said caregiver Bonnie Niebuhr after participating in her first SupportSight meeting.

Dealing with Macular Degeneration

The slow, progressive and unrelenting way macular degeneration robs one of his/her sight is the frightening prospect awaiting those diagnosed with the disease. Patients who are told that they have age-related macular degeneration are anxious to hear what to expect in their future. Of course, the first place they look for guidance and support is their own doctor. And, while doctors have the needed information and are very knowledgeable, they do not have the time to spend with every patient who needs to be led down the beginning path of understanding how macular degeneration will affect and change their lives. Often, the best answers about dealing with macular degeneration and its impact on day-to-day life, can only come from someone living with it every day.

How MVRF SupportSight Started

Alexander Brucker, M.D., Professor or Ophthalmology, retina specialist, and surgeon at Scheie Eye Institute, University of Pennsylvania, recognized this need for peer group support to help those with macular degeneration. Dr. Brucker approached the Macula Vision Research Foundation with the idea of sharing more information between doctors and their patients with macular degeneration, as well as a time and a place to ask questions concerning particular issues and conditions. MVRF welcomed the opportunity to take on the responsibility of organizing and funding Dr. Brucker’s concept of a support group.

SupportSight Seminars

SupportSight seminars are held once a year in each city. They focus on the questions patients think of after they hear the diagnosis of macular degeneration. Among the topics discussed are: what it means to have macular degeneration; how to fight depression; tips for coping with lost vision; medical updates focusing on new research and treatments; services for partially-sighted people in their own backyard; the genetics of macular degeneration, nutrition and dietary modifications; and surgical interventions -- retinal chip, implantable miniature telescope. People at SupportSight seminars are encouraged to ask questions and share their personal observations and strategies about how they are coping.

SupportSight attendees also learn what services are available in their individual areas, such as the local library which issues, free, large print books and talking books; how to get a talking book machine; where to call for special transportation; a large easier-to-read thermostat; and many social services.

In addition to the seminars, Low Vision Fairs are provided to enable attendees hands-on experience with the latest in visual aids from talking watches to high-tech adapted computers.

MVRF SupportSight Hotline

MVRF SupportSight provides a toll-free Hotline 1-866-4MACULA (1-866-462-2852) to answer questions from patients, their families and friends.

Herb and Karen Lotman

Herb and Karen Lotman, who have dedicated themselves to ending this debilitating disease for future generations through scientific research, are also dedicated “to easing life’s journey for those who have the disease by providing greater knowledge, support, encouragement, and help,” said Dr. Brucker.

The operational and administrative costs of the MVRF SupportSight are fully funded by the Karen and Herbert Lotman Foundation, allowing any and all funds raised by the organization to go to research and public education.