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Gordon Gund

A Conversation with Chairman Gordon Gund

Chairman's Message
From Dark Days in Russia, The Real Promise that Lies Ahead: The Path to Clinical Trials

WE AT THE Foundation Fighting Blindness are delighted to be ushering in a new era - an era of clinical trials and the promise of new treatments becoming available in the next few years. This year's annual report is not only a tribute to our success in advancing clinical research in 2010, it provides a glimpse into the future and the hopes and challenges that lie ahead as we launch more and more human studies for vision-saving therapies. But before you venture ahead into this annual report, I'd like to tell you about a turning point in my life, and how it underscores the indispensible role of sound clinical research.

As I was rapidly losing my vision to retinitis pigmentosa more than 40 years ago - before I really knew what a clinical trial was or imagined helping to establish a retinal research nonprofit - I was determined to find something to stop or reverse my vision loss. I was convinced that given the level of scientific and medical knowledge in the U.S. and other parts of the world, somebody somewhere had to have something that could save my vision.

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Frustratingly, each alternative I explored failed, and my vision continued to quickly slip away. None of the options available to me were based on sound scientific knowledge - that knowledge didn't exist back then - but my fear of losing my independence and ability to function in the seeing world kept me searching. I was desperate.

In 1970, as I rapidly lost my central vision and exhausted just about every potential treatment option that was known to me, I obtained a visa to go to Russia for a therapeutic regimen that purportedly could restore my vision. This had become my last hope. It was the height of the Cold War and the Vietnam War - Russia and the U.S. were not on good terms - so getting the visa took several months and the Russian government was suspicious of my intentions. By the time I got the visa, my central vision was gone so my brother Graham accompanied me for what we thought would be a four or five day treatment period.

When we arrived at the institute in Odessa, we were shocked by the primitive conditions there. I could only perceive light by then, but could feel paint peeling from the walls as I navigated my way through the facility. Light bulbs hung from the ceiling by electrical cords. Toilets didn't flush. They had no phone service back to the U.S., so I was unable to call my wife, Lulie, who had just had our youngest son, Zachary, a few weeks before.

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Shortly after our arrival, we were told that the treatment would take four to five weeks instead of a few days. Graham couldn't stay because of an important exam he had back in the U.S., so I was left by myself unable to see or communicate with the staff or patients, none of whom spoke English.

“WE’VE COME A LONG WAY SINCE MY DARK DAYS IN RUSSIA AND THANKS TO YOUR SUSTAINED COMMITMENT TO FUNDING THE BEST RETINAL RESEARCH IN THE WORLD, THE PROMISE OF SAVING AND RESTORING VISION IS REAL.”I received 10 injections per day of what they called "animal biostimulants" to my temples, back, shoulders, and buttocks. My eyes were also bathed in a special solution that was transduced with sound waves. The treatments did nothing, and I sat alone in the institute for several weeks without my eyesight and little hope that it would ever be restored. It was an emotionally devastating time, and I hit rock bottom.

Fortunately, Lulie came to my rescue, arriving a few days before I was due to leave. How wonderful it was to have her retrieve me from that awful situation.

My experience in Russia was a watershed moment. It was there that I came to terms with my blindness, and it was there that Lulie and I made a commitment to finding treatments and cures for retinal degenerative diseases.

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Chairman Gordon Gund and his wife Lulie share a moment outside their home near Princeton, New Jersey
Gordon and Lulie at their home near
Princeton, NJ

Through my experience and interactions with the few true retinal experts in the U.S., it became clear that not only was there no silver bullet, there was very little known about the retina and the causes of these conditions. There was an overwhelming need to establish a solid scientific base of information before we could even begin to think about identifying potential therapies. We established the Foundation with Ben Berman and a few other families within the year to begin driving this critical research.

Fast forward 40 years, and I am absolutely delighted that we are now saving and restoring vision through the LCA gene therapy and Neurotech clinical trials, and several additional human studies are underway, imminent, or around the corner. It seems like a long time, but compared to the research efforts and progress for other diseases and conditions, we've done very well.

Reaching this clinical milestone hasn't come easily. It's taken decades to understand how the retina works and the genetic factors that cause vision loss. It's also taken several years to develop the animal models of disease and evaluate potential treatments in them. It has takenthousands of lab studies to find treatments that are ready for the clinic.

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Over the last few years, the Foundation has put the people, procedures, resources, and facilities in place to conduct rigorous human studies, which will ensure that treatments and cures are safe and effective for the people who need them. These efforts take several years and cost several million dollars, because of the intensive measurement, monitoring, and control that are required to accurately assess each therapy and gain FDA approval.

We've come a long way since my dark days in Russia and thanks to your sustained commitment to funding the best retinal research in the world, the promise of saving and restoring vision is real. We are well-positioned to make incredible strides in the clinic over the next few years. It will continue to take a lot of work and investment, but we are already seeing some exciting returns.

Thanks for being a part of the Foundation's family as we enter this exciting era of clinical trials. Enjoy the rest of the annual report and take heart in the real promise that lies ahead.

Chairman Gordon Gund and his wife Lulie share a moment outside their home near  Prenceton, New Jersey
Gordon Gund

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