Steve Rose talks to Vision Seminar attendees.

A few days ago, on Saturday, February 4, I had the pleasure of standing before an audience of more than 600 attendees at the Foundation’s Boca Raton, Florida, Vision Seminar, which was just one in an ongoing nationwide series sharing research news, insights and developments with anyone interested. As FFB’s chief research officer, I often present at these events, and in Boca, it was amazing to see so many people – the largest crowd ever in that location – hungry for information about vision loss due to age-related macular degeneration (AMD) and inherited rare retinal degenerations.

The seminar was co-hosted by the Retina Group of Florida, a Foundation partner in educating the public about living with low vision and looking into potential treatments. I shared the podium with three of the group’s doctors – Larry Halperin, Krista Rosenberg and Scott Thompson – who, primarily, presented on AMD, which is the leading cause of vision loss for people over 50 years of age. As the audience was mostly interested in this topic, the doctors were swamped with questions during the break.

As for me, I talked about inherited rare retinal degenerations, such as retinitis pigmentosa (RP) and Stargardt disease, and how, for decades, the Foundation has led the way to understanding these blinding eye conditions. I also reviewed the work FFB is doing in gene discovery, gene therapy, stem cells and drug discovery, leavening the information with some of my favorite sayings, such as “What’s good for your heart is good for your eyes” and “FFB leaves no stone unturned “ in our quest to find treatments and cures.

Larry Halperin, center, was one of three doctors from the Retina Group of Florida who spoke at the event and answered questions.

After the talk, I, too, was asked many questions, including one I hear all the time: “Should I have my cataract removed if I have RP?” This is a tough one to answer, as there is no tried-and-true formula guaranteeing that doing so will not result in a further loss of vision, as one attendee told me happened. One issue discussed with the Retina Group doctors is that some surgeons, when removing cataracts, use a very high-intensity light which can harm the retina. They said there have been attempts to use dimmer illumination.

Someone else touched on the topic of RP progressing more rapidly in women during pregnancy. I’ve heard this before, and while no ophthalmologist I’ve asked has a definitive answer as to why, there is no doubt that it happens in some women. It’s certainly a subject that deserves investigation, and I will look into a possible study for the Foundation to undertake.

I should mention that my parents live not too far from Boca Raton, in Hollywood, Florida, and I get to stay with them when I’m down there, and experience firsthand (as I know many of you also experience) the trials and tribulations of getting older, including vision issues. AMD runs in my family, and while my dad has been lucky to only have mild vision distortion, it is evident.

Also, I am being followed by my ophthalmologist yearly as I am beginning to show drusen, tiny protein and fat-containing deposits that accumulate in a thin layer of cells beneath the photoreceptors in the retina. This means I really have to take seriously my own advice whenever I talk – lay off the donuts and other fatty foods, eat healthier and GET SOME EXERCISE!  Also, another relative who lost his vision to X-linked RP was visiting, and he and I got a chance to talk a bit. It’s amazing to me how mobile and independent he is, but, still, there is no doubt that he misses his vision, so this quest for me is personal in many ways.

I really enjoy the Vision Seminars, as I always learn from the other presenters. (Scott’s “10 Myths About Macular Degeneration,” for example, is something I’ll incorporate into my talks from now on.) I also get the chance to meet with affected individuals and their family members, a truly rewarding aspect of my job. I enjoy talking with these people and showing them that we’ve come a long way from the Foundation’s first days, when next to nothing was known about these diseases. Today, I tell them, there are many clinical trials, or human studies, for treatments, with more on the horizon. It’s a message they’re very eager to hear.