It was Aug. 19, 2004, late morning. My wife and a friend had escorted me from our home in Valparaiso, Ind., to the Chicago Marriott Downtown to help me get settled in for the Foundation Fighting Blindness VISIONS 2004 conference. The foundation had held another conference there two years ago, but VISIONS 2004 was my first national conference of any sponsorship. We walked into the hotel on a red carpet, flanked on either side by hotel staffers. We wondered what celebrity was about to arrive. Surely not us?!
After I registered, found my room, and the ladies left for home, an employee gave me a very helpful tour of the hotel. I now could locate the conference registration and information desk, the exhibit hall and most of the session rooms.
As I walked around the hotel, 16th floor (room), 7th floor (vendors, registration and grand ballroom), 5th floor (session rooms), anticipating the opening session, I was amazed. I had never seen so many guide dogs and white canes assembled in one place before. My wife was unable to contain a smile when she saw a poodle guide dog. When I accidentally hooked white canes with another conference attendee, I challenged, "En garde!" and we squared off as if to duel. We laughed and went on about our business.
For two and a half days we heard all about eyes from some of the world's leading physicians, scientists and clinicians, sharing details about current research, clinical trials, treatment options and the future of retinal degenerative disease research. In addition, we had the opportunity to attend coping seminars, visit the exhibit hall, have our most complicated questions expertly answered in "The Doctor Is In" sessions and meet new friends in various networking sessions. I felt rather alone with my choroideremia until I was invited to the "first annual choroideremia pizza party!"
In the exhibit hall, vendors displayed all of the latest electronic, optical and mechanical low vision equipment. When I mentioned to them the high cost of such devices, all they could do was agree. I use an old black- and-white closed-circuit television enlarger. Newer models feature full color and automatic focusing. (Very impressive!) I was excited to see the new portable enlargers, too. Some have very small screens, but one prototype had a much larger screen and folded flat like a laptop. There were also many talking devices for the totally blind.
In one of the sessions, it was announced that in the year 2001, gene therapy had successfully restored vision to a Briard dog, Lancelot, who was born blind from an inherited retinal degenerative disease called congenital stationary night blindness. Lancelot can now catch a ball! Since then, gene therapy has given sight to many dogs, and this research may hold hope of sight restoration for humans with Leber's congenital amaurosis and possibly a host of other retinal degenerative diseases such as retinitis pigmentosa, macular degeneration, diabetic retinopathy and glaucoma.
Stem cells are being grown in the laboratory and transplanted into the retina to replace defective photoreceptor and retinal pigment epithelial cells. Yes, I did say replace!
Drugs are now being developed to inhibit angiogenesis (choroidal neovascularization), the forming of new, abnormal blood vessels in the choroid. These drugs are used as alternatives to laser surgeries for the treatment of wet macular degeneration. Angiogenesis drugs are administered to the back of the retina using a curved needle.
Dietary supplements have been shown to slow the progression of age- related macular degeneration in some cases. They do not do the same for RP.
One session on driving with low vision gave all the details about bioptic driving, but mainly for the state of Illinois. I believe that an acuity of 20/40 was acceptable for night driving and 20/70 for daytime. Via a phone call to the Indiana Bureau of Motor Vehicles (317-233-6000) in Indianapolis, I found out that a low vision specialist must certify a low vision candidate for a special driver training program using the bioptic telescope. There are five or six Indiana sites for such training. When training is complete, all materials are sent to the state bureau for its approval.
What are bioptics? They are telescopes fitted into the upper lens portion of a pair of eyeglasses. Bend your head slightly downward in order to view enlarged images. I imagine by now there are bioptic driving programs in nearly all states.
I must mention the positive attitudes of everyone attending this conference. These people have extremely serious eye diseases; many of them were totally blind. Others have family members, sometimes infants or small children, with devastating eye conditions. Yet they were at the conference to gather the latest information about research, new treatments, etc., not to complain. I came away exhilarated, ready to continue facing the daily realism of my own low vision, and ready to attend another conference.
Since I am on SSDI, the Indiana Governor's Council for People with Disabilities paid for my conference registration and hotel. I want to thank them for making my attendance possible. I would also like to thank the Hank Hofstetter Opportunity Grant Fund for additional money for food and gas mileage. In the past, the high costs of conferences have kept me away. Other states probably offer financial assistance for conference attendance. I strongly recommend people investigate such funding sources.
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