Hi Guys, I have to share this with you. We all talk about the Foundation Fighting Blindness as a reference to what is acceptable science of RP. Have you ever wondered how it got its start... well here is the true Story of Gordon Gund, the founder of the FFB. I found this on the Harvard Magazine site dated 1997. In February, a worldwide audience of 600 million watched the annual NBA All-Star Game, played this year in Clevelands Gund Arena. The game was a special one, since the National Basketball Association turned 50 in 1997, and all but three of the designated 50 greatest players in NBA history showed up to help celebrate. The occasion was particularly exciting for Gordon Gund 61. For four years, he had lobbied NBA commissioner David Stern--once, even haranguing him on an Aspen ski lift--to bring the All-Star Game to Cleveland. As principal owner of the Cleveland Cavaliers and the new, state-of-the-art Gund Arena, Gund was hosting the big party in his hometown. Naturally he was thrilled to meet basketball greats like Bill Russell, Julius Erving, and Bob Cousy, and to rub shoulders--well, rub shoulders against elbows--with megastars like Michael Jordan. And as chairman of the NBAs Board of Governors, he had a superb seat for the game itself. But in a way, for Gund, all seats are equally good, since he has been blind for nearly 30 years. In 1970, a progressive degenerative disease of the retina called retinitus pigmentosa (RP) took what remained of Gunds vision when he was 30 years old. Now, at 57, he has lived the first half of his life with normal sight and the second half in darkness. Theres a stereotype of blindness--which I once held myself--that it disables you in more ways than it in fact does, he says. Now I see that the limitations are actually very narrow. Narrow indeed. An energetic venture capitalist and investor, Gund hopscotches the country as chairman and CEO of Gund Investment Corporation, whose holdings include hotels, apartment and office buildings, and Nationwide Advertising Services, a recruitment-advertising firm that is the largest in its industry, billing $282 million annually. He has a stake in the San Jose Sharks of the National Hockey League. As for the Cavaliers, when Gund and his brother George took over in 1983, the team was nicknamed the Cleveland Cadavers; among the leagues worst performers, they drew only about 4,000 fans per game. But the Cavs have reached the playoffs 10 times in the last 13 seasons, went to the conference finals in 1991, and this year made another run at the playoffs. Each home game draws about 18,000 to Gund Arena. Besides running his own businesses, Gund serves on several corporate boards of directors, including those of Kellogg and Corning Glass, and from 1980 to 1989 he presided over Groton Schools board of trustees. He is also active in philanthropy. He has donated a million dollars to Harvards Mind, Brain, and Behavior Interfaculty Initiative, for example, but he works hardest for the Foundation Fighting Blindness, which he cofounded in 1971. (In May, Gund and his wife, Lulie, are scheduled to receive the Special Recognition Award of the international Association for Research in Vision and Ophthalmology.) Gordon and Lulie Gund have been married for more than 30 years and have raised two sons, Grant and Zachary; they maintain homes in Cleveland and in Princeton, New Jersey, headquarters of Gund Investment Corporation. Vacations pull them to their house in Aspen--where Gund skis the expert trails--or to Nantucket for sport fishing and island life at their beach house. In his spare time Gund may visit an art museum or work on one of his woodcarvings (see next page). Commonly, people who meet Gund forget very quickly that he is blind. If they even notice. Years ago, the Gunds hosted a dinner in a private dining room at Locke-Ober Restaurant in Boston. It was a long dinner that went on until the wee hours of the morning, recalls Mike Deland 63, a longtime friend. Finally the waiter brought Gordon the bill, and he immediately passed it to Lulie to read. The waiter looked at Gordon in utter shock--he had spent hours in the room with him and never had an inkling that he was blind. For the first 25 years of gunds life he not only had normal vision but was an extremely active youth, a hell-raiser, according to one old friend. At Groton and Harvard he played ice hockey and rowed on the crew. Gund was a wild skier who liked to leap off moguls, recalls Ferdinand Colloredo-Mansfeld 61, a college roommate. After a run he looked like a snowman. An accomplished amateur photographer, Gund was also a certified private airplane pilot. After college Gund spent three years in the navy, mostly in the Pacific. Once discharged, he began working for Chase Manhattan Bank in New York City. Then in 1965, two momentous events occurred: he met Llura (Lulie) Ambler Liggett and he was diagnosed with RP. At the time I didnt pay much attention to it, Gund recalls. I was told it would affect my sight but I wouldnt have a serious loss of vision until I was in my sixties. To a 25-year-old kid that doesnt mean much. But his night and peripheral vision continued to diminish steadily over the next few years. In 1966, Gund married Lulie in a nighttime ceremony at her familys house in Florida. The reception was in an orange grove, recalls Colloredo-Mansfeld. I remember seeing Gordon walk into a wooden fence that was fairly visible. I realized that his eyesight had deteriorated more than I had noticed. As his night vision declined, Gund could no longer drive home when socializing after dark with friends. And he had a scary daytime experience when landing a plane at Teterboro Airport in New Jersey. On the downwind leg, I was told there were 14 other planes in the landing pattern in front of me, Gund recalls. But I could count only about seven. I went way down, out of the pattern. The tower called me to ask what was wrong. When I got in, I decided I couldnt fly again. I could see clearly only what was straight ahead of me. RP was contracting Gunds visual field to tunnel vision--and then the tunnel itself began to narrow. It was like looking through a straw, Gund says; he could see whatever the straw pointed at quite well, but nothing outside the tube. (For this reason, some people with RP can be legally blind yet record 20/20 vision by scanning an eye chart.) The disease first affects a doughnut-shaped area, surrounding the center of the retina, where photoreceptors called rods predominate. Rods can respond to dim light, and thus make night vision possible. Gradually the retinal degeneration closes in like a noose toward the retinal center or macula, where the cones, which enable color vision and fine acuity (but need bright light) are concentrated. You end up with a circle of central vision, surrounded by a rubber tire of lost vision, says Alan Laties 53, professor of ophthalmology at the University of Pennsylvania Medical School, who has chaired the scientific advisory board of the Foundation Fighting Blindness since its inception. Its like being in the dark with a flashlight--you can point the flashlight, but youll bump into things. RP patients frequently suffer cuts and bruises on their shins--from walking into low impediments like coffee tables. The retina has 20 times more rods than cones, but when the rods falter, the retinal environment changes, with consequent damage to the cones. Think of RP as a 1-2 punch in boxing, says Laties. It isnt the first punch that disables you, but the combination. Gund was able to see his son Grant, born in 1968, but by the time Zachary appeared two years later, his father could not view the infants entire face at once. Gund could, however, create a visual gestalt by scanning across a face, and gazed at his two boys all he could, since he knew that before long he might never again see his children. In 1970, his macular vision deteriorated rapidly and he went from having about 75 percent of a normal visual field to almost complete blindness in only a few months. There were differences even from day to day, Gund recalls. At one point I could pick up, say, the Wall Street Journal and take in a whole paragraph at a gulp. Then I could see only a sentence at a time, then a word, then only single letters. I could actually measure it, and it made me frantic to find something that would help. Newton Merrill 61, a close friend, says that Gund sought out every possible solution. He was turning over every stone. Gund had both the motivation and the monetary resources to pursue all possibilities. (His father, Cleveland investor and banker George Gund 09--for whom Harvards Gund Hall is named--had secured his familys financial future by acquiring the American rights to a Dutch decaffeinated drink called Kaffee Hag in 1917; over here, the product eventually evolved into Sanka.) Gund played his last card, a long shot, in November 1970. With the help of Elliot Richardson 41, LL.B. 44, he obtained a visa to go to the Filatov Institute on the Black Sea to try an experimental treatment for RP that involved attempts to stimulate the retinal cells with ultrasound and injections of animal biostimulants. The hospital was a czarist-era building in a state of advanced decrepitude--paint peeling from the walls, bare light bulbs, toilets that did not flush, and hot showers only once a week. Russian medical science was equally unprepossessing; the treatments, for example, involved 10 to 12 injections daily, often into the temples, that site apparently chosen on the fanciful notion that something added to the bloodstream had to be injected near the tissues one intended to affect. Lulie Gund had just given birth and could not travel; brother Graham Gund, M.Arch. 68, M.A.U. 69, one of Gunds five siblings, accompanied him to Russia. But in Odessa they learned that, instead of a few days, the treatments would take four weeks. Professional responsibilities compelled Graham to return to the States. Gund was alone and newly blind in a strange country; he could not even get a phone call through to the States. Nobody spoke English, and I had no Russian, he recalls. Since I could not see, sign language was not a possibility. I had to go right down to the basics within myself. Learn where the bathroom was, where to go for treatments. I wasnt going to get a meal unless I could find out how to get to the dining hall and what the food was. I had to come to grips with the fact that the sighted part of my life was over, and the new part beginning. A big thing is the anxiety about the unknown. If you lose your sight from an accident, you dont think about it, but with progressive degenerative diseases, theres the stress of wondering what is coming. There was no wondering about parenthood; infant Zachary and toddler Grant awaited him at home. Luckily, there was also Lulie, an upbeat, resilient woman who has surely been Gunds greatest asset. Were it not for her, I would not be doing much of what I do, Gund says. She makes sure I dont get either too down or too cocky. Zachary Gund says, My parents have amazing communication with each other; they have signals for everything. They do things that even Grant and I dont know about. Shortly after Gund went blind, he and Lulie hosted a summer barbecue for some friends. Gordon was putting the steaks on, but he forgot to put the grill in place and dumped the steaks straight onto the coals, Mike Deland recalls. Lulie started to get up to help him but thought better of it and sat down instead. She realized that if Gordon had to go through the process of retrieving the steaks off the coals, he would never forget that grill again. There are programs that use blindfolds to train people who are losing their vision for a sightless existence. But Gordon was never interested in the idea of learning how to be blind, says Graham Gund. Instead, as Lulie puts it, You dont limit your life to the problem you have. You learn to get your life to work. You just find new bridges. Bridges like super-acute hearing: longtime friend Bill Polk, headmaster of Groton School, recalls a gathering at the Gunds Nantucket house, where Gund alerted the others present to some beautiful bird calls--calls that no one else could hear. During Zachary Gunds childhood, Other kids would sometimes say, Gee, youre so lucky--your father cant see, so if you get in trouble you can just hide on him. It didnt work that way. Dads sense of hearing is so acute that you could sit in a room and he would hear you breathing--and hed even know who was breathing. Deland, who suffers from chronic back pain, notes that on phone calls with Gund, He can tell by my tone of voice that its a day when my back is really stirred up. Nobody else in my life has been able to do that. Astonishing mental powers are another kind of bridge. Right after Gordon lost his eyesight his memory dramatically changed, says Graham Gund. His ability to remember things is staggering. If he were hosting an event where he didnt know people, and maybe 30 or 40 new people came up and shook his hand, at the end of the evening when they were leaving he could tell you who each one was. Gund routinely prepares for board meetings by memorizing all relevant documents, including financial statements, and can perform amazing feats of calculation in his head. During our [Grotons] capital campaign, we would all be sitting around with our calculators out, looking at spreadsheets, says Polk. Gordon just used his head and hed be right on the dime. Gunds rich sense of humor also transcends sight. Gund sometimes ice skates with his sons on a pond behind their Princeton house, showing some of his previous skill as a hockey player. I can still skate pretty well, he once told Newton Merrill. But, damn! I just dont make a good goalie anymore. A woman once approached Gund at Aspen and said, Why do you wear that vest that says blind skier? Ive watched you ski and you obviously are not blind. Deadpan, Gund replied, Its because I like to ski with my eyes closed. Contented, the woman went on her way. Gund, however, is quite serious about the Foundation Fighting Blindness, which the Gunds and Beverly and the late Ben Berman (whose two daughters were diagnosed with RP) launched, along with others, in 1971 as the National Retinitis Pigmentosa Foundation, to fund research into the disease. At that time, there was very little interest in diseases that related to quality of life, says Graham Gund. The government was funding research only on things that were life-or-death issues. In 1994, the foundation changed its name to better reflect its longstanding focus on the whole family of retinal diseases that affect the photoreceptors (see Visionary Research). The foundations philosophy reflects Gunds outlook as a venture capitalist. Weve always tried to provide seed capital, he says. We help get new efforts going and--if they are successful--the National Eye Institute [a branch of the National Institutes of Health], which has much greater resources, will fund them. In 25 years the foundation has raised more than $100 million, and funded more than $75 million in research--and I would bet that, as a result of that funding, those research institutions have ultimately received four to five times that amount. If Gunds loss of sight was a case of terrible luck, what he has done with his blindness is quite the opposite. He was always a wonderful friend and a great companion--disciplined, fun, hardworking. But you didnt see him as someone who might become, say, CEO of General Motors, says Stewart Forbes 61, another college roommate and longtime friend. It wasnt until he experienced his blindness that he became extraordinary. Now theres no limit to his capacity to take on a task, to lead and to relate to others. He realizes that through his blindness he discovered abilities he never knew he had. Consequently, he has a tremendous belief that each individual has a vast reservoir of untapped skills and capabilities. Take skiing, for example. Im a better skier now than I ever was sighted, Gund says. For the last 16 years, he has skied with Aspen instructor David Elston. Elston skis directly behind Gund and gives him verbal directions as needed; raw athletic ability and the feel of snow and slope take care of the rest. They tackle trails up to the black diamond (expert) level and have had no serious accidents. Hes a better skier than 75 percent of the people out there, says Elston. Hes strong, aggressive, in good shape, and he knows how to use his edges. Gordon carves his turns, he doesnt skid through them. Two years ago, NBC broadcast a short spot on Gunds skiing exploits during half-time of a Cavaliers game. He explained that the sense of freedom was, for him, a big part of the exhilaration: When you are blind you are limited, most of the time, to the extension of your arms and your hands, so your space is pretty closed in. When you get out and can move as freely as this and as fast as this without holding on to anyone...its really very special, because you dont get to do it very often. A couple of years ago Gund and Elston skied down a black diamond trail that featured plenty of big--18-inch-high--moguls. Gund skied a flawless route down the mountain, gracefully following the fall line. He skied it as if it were flat, Elston says. When they arrived at the bottom, Gund turned to Elston, puzzled: I thought you said there were moguls?
Posted on: Tue, 05 Aug 2014 23:59:07 +0000
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