Spring 2016 – Interview with Gordon Gund

He s been blind since 1970, but is lighting a path to prevention and cures for fellow sufferers

The Gunds have been called “the renaissance family” by Forbes, and not without reason. Since the 1920s they have been masters of numerous businesses—including cereal, beer, banking, glass, real estate, and sports teams—and important patrons to scores of philanthropic causes like Kenyon College and the Cleveland Institute of Art.

So as Gordon Gund came of age he intended to be an energetic donor as well as an active contributor to his Cleveland family’s billion-dollar businesses. What he didn’t know was that he would go blind as a young man. In 1971 he created the Foundation Fighting Blindness to help others deal with vision loss, donating more than $150 million himself and raising over $450 million more. In 2014, he and his wife, Llura, promised to match, without limit, gifts made to the charity during a one-year period.

Philanthropy spoke with Gund about what it’s like to grow up in wealth, his own blindness, his philanthropy for fellow sufferers, medical research, and more.

Philanthropy: When did you go blind? What was that experience like?

Gund: Retinal degenerative diseases are inherited. That means my parents each had a recessive gene, and it turns out none of my five siblings had it, I’m the only one who does. There weren’t any other family members who had any sign of it. So I didn’t know till my early 20s.

I had been an officer in the Navy out on a destroyer in the western Pacific with a home port in Japan. I loved it, but I probably was losing my peripheral vision all that time. I got back and went to New York to start a business career and started having difficulty seeing at night. I was diagnosed as having retinitis pigmentosa, which is a retinal degenerative disease. Altogether, retinal degenerative diseases affect about 10 million Americans. I was told I’d probably have useful vision until my 60s. When you’re 25 that seems like forever.

But I started having further difficulty seeing at night, and then my day vision went very rapidly, atypically. It was gone by 1970. Back then there was no research going on to speak of, and very little understanding about these diseases or what causes them. So my wife, Lulie, and I decided we would commit ourselves to finding treatments and cures so that in the future people with this diagnosis wouldn’t have to face the same frustrating experience.

Philanthropy: How did you begin to fight this disease?

Gund: I’d seen a Dr. Eliot Berson at the Massachusetts Eye and Ear Infirmary. When I met with him, he said, “I don’t have anything that will help you. I wish I could put together a laboratory to start trying to find answers.” In the fall of 1971, Lulie and I joined with others to start a charitable foundation now known as the Foundation Fighting Blindness. Later I followed up with Dr. Berson and our new foundation began to work hard to raise funds to construct and staff a multidiscipline lab that he was putting together at Harvard. We had to populate the field with researchers; there were very few there. Our initial focus was getting a lot more researchers into the field. We had to do that before we could find treatments and cures.

Our scientific advisory board was our greatest asset, then and now. It has guided our whole research effort all the way through. These things are always more complex and difficult than you think, but we built up the knowledge base and developed a much better understanding of the retina and retinal diseases. The work we’ve done is largely responsible for having identified over 260 different gene mutations that cause these diseases.

Philanthropy: What’s the state of progress now?

Gund: We’ve still got a long ways to go, but we are really delivering on our mission. We have a gene-therapy treatment that we’ve funded since the gene was first identified as a culprit in 1993. The University of Pennsylvania Children’s Hospital is one of our test sites, and it’s finished its third phase of trials. More than 100 children and young adults have had significant amounts of sight restored through the therapy.

If you look at age-related macular degeneration, our research has led to two treatments that are improving sight for many people. We also funded the research that underlies a bionic eye called the Argus II that helps some people who have lost all of their vision to see anew.

We have over 20 human trials going on now. And the exciting thing is that it’s just the beginning. My wife says the analogy is making popcorn: You start out with just the kernels, then after a delay all of a sudden it starts popping, faster and faster—that’s what’s happening now.

My wife and I have issued a challenge to further accelerate things. We’ve said that we will match any major gift to the Foundation Fighting Blindness, dollar for dollar. There’s no limit to what any one person can give; we will match. It’s open until June 30, 2016, and we’ve already raised $85 million. These clinical trials cost a lot of money, much more than lab-based research, so we need more funds to take advantage of all the progress that’s been made.

Philanthropy: What has it been like to invest in something that’s so long-term? How do you keep hope alive?

Gund: In the early years it was difficult. Fortunately many members of our scientific-advisory board are skilled at communicating what’s going on in lay terms. That was very helpful.

There was tremendous progress being made, building the blocks of understanding that needed to be there first, and happily we got through that. In the past 15 to 20 years there has been so much dramatic progress it’s pretty easy to retain interest. But it wasn’t for quite a while. The first gene defect wasn’t discovered until 1989.

We’re now exploring the use of induced pluripotent stem cells—where you can take cells from a person’s skin or blood, and the scientist can reprogram those cells back into becoming stem cells that are able to be coaxed into growing into almost any cell type in the body. So you can make retinal cells out of a sample of adult skin. That avoids both the ethical issues of harvesting embryonic stem cells and the possibility of the immune system reacting against stem cells taken from another person. There’s a lot of research going on right now to replace whole retinas.

Philanthropy: Have you been able to take advantage of any of these treatments?

Gund: Well, my gene is not known. Of the over 260 genes that I mentioned, the experts believe that represents somewhere between 70 and 75 percent of people with one of these diseases. But it happens that mine’s not one of those, so I couldn’t avail myself of a gene therapy even if my photoreceptor cells still had any life left in them. And I’m not sure after this many years that there’s a lot going on in my eyes. I still have a little light sensitivity, which is valuable to me because it allows me to know the difference between day and night. That’s why I don’t use the bionic retina.

I don’t see any forms and I don’t see any colors. But I really appreciate orient ing myself to day and night, and to light in a window and that sort of thing. I’ve had a phenomenal life despite it. I still hope someday I’ll be able to see. My wife says, “Let me know a year ahead of time so I can get ready.” To me she looks just like she did back in 1970.

Philanthropy: I heard you’re a skier?

Gund: I skied a year ago. I used to ski a lot.

Philanthropy: And you’re a sculptor?

Gund: It’s a way for me to be in touch with a different part of the world and a different part of myself. It’s absorbing for me, a great way to get away from everything else and really just be in the moment. I really want people to be able to touch the things I make, because touch is how I created them, so anyplace that has them I insist the curators let people have that experience.

Philanthropy: Cleveland has a long history of philanthropic leadership. What was it like growing up there?

Gund: Cleveland has had very philanthropic people going way back. In the early years of the Industrial Revolution, John Rockefeller getting his start there, the Hannas, the mining families, the steel families, all were very philanthropic and very interested in community. It becomes something everybody understands the importance of and wants to participate in. That’s what happened early on with Cleveland. Both of my parents were very charitably inclined. They devoted not only their financial resources, but their time and energy. My mother was very involved as a volunteer at an orphanage right near our house, for instance. So they got all of my siblings and me to be much more aware. They were great role models.

Philanthropy: You’ve owned several sports teams. We’re asking in this issue of our magazine whether there can be philanthropic effects from supporting athletic pursuits. Do you think sports can advance public purposes?

Gund: Oh, I think it’s huge. When the Cleveland Cavaliers were struggling we found a way to acquire them because it would’ve been a huge downer for the city to lose its NBA team to bankruptcy or a move. For similar reasons we helped make it possible to bring the Cleveland Indians into a new baseball stadium. We owned our various teams to be businesses, and they were, but they also made a big difference in the spirit and pride and image of the areas where they were located.

Philanthropy: You mentioned that you’ve lived a phenomenal life in spite of your blindness.

Gund: Blindness never stops being difficult. You never totally adjust. Every morning I wake up wishing I could see the sun. But one of the things that really inspires me and my wife is trying to take something difficult and turn it into something positive. If we can help prevent my problem from happening to other people, that gives the experience value. That’s the way to look at any disability. Try and turn it into something that’s positive for yourself, which can be done, and positive for other people.

Since I lost my sight it’s amazing what has happened in terms of attitudes of the public toward disabilities. There’s still an awful lot of unemployment among people who have disabilities, but it’s not because of old stereotypes or limits. The word “disabled” implies someone is unable to do things. That’s not the case at all. A better approach has to start with the people who have the disability realizing they have an obstacle in one area, but a lot going for them in other areas—which we need to figure out how to use, so we can be accomplished like other citizens. It’s not easy to do that, but you really have to focus on what you can do, not what you can’t.