Human Factor: Losing sight, gaining a vision

I find great peace in the knowledge that I will see my children.

When I was 13, a vision specialist told me I was slowly going blind. He explained I had a genetic disease of the retina that would cause my photoreceptor cells to cease functioning and then expire. There were no treatments or cures, he stressed, and he dispassionately suggested I should not hold out hope that any would be developed in my lifetime. I was left searching for the right way to deal with it all.

A parade of angels showed me the way. It began with my parents. Devastated by the news, they somehow found the strength to seek out the leading medical researchers in the field. This led us to University of Miami Bascom Palmer Eye Institute, where we found Dr. Samuel Jacobson.

He rescued my family. Dr. Jacobson explained that he and other researchers had made much progress discovering treatments and cures, and in light of his apparent devotion to his work and obvious brilliance, this optimism gave us great hope. Generous and caring, Dr. Jacobson has remained my treating physician to this day. With his support, we gained the counsel and friendship of many of his peers—geniuses like him laboring to eradicate blindness.

Because a scarcity of financing was hindering those scientists’ efforts, my parents turned to family and friends for help raising research funding in my hometown, Miami. Our community responded with overwhelming support. Friends worked selflessly and tirelessly to host an annual black-tie fundraiser. Each year they recruited more attendees, and each year the attendees’ generosity wildly exceeded our expectations. I learned from these volunteers and donors that at its best, the human spirit is beautiful and selfless.

Hope For Vision was born of that lesson. I knew there were many families like mine that would, if properly educated and supported, turn to their own communities for help funding research. My friend Erich Wasserman encouraged me to work to this end, and then agreed to do so along with me. Founding donor Adrienne Arsht set us on our way with advice, introductions and unparalleled generosity.

We founded Hope For Vision in 2004, and for the next five years I had the privilege of overseeing its rapid growth. I spoke at numerous events, appeared in national media, testified before lawmakers, and met with afflicted individuals and their families. We launched Communities of Hope in several cities, hired talented executives, supported fundraising and awareness events large and small, recruited a world-class Board of Visionary Scientists to evaluate grant proposals, gained tens of thousands of supporters, raised well over $5 million, and channeled more than 95% of that money to cutting-edge vision research.

That research has generated groundbreaking results. Most recently, the Adrienne Arsht Hope for Vision Retinal Degeneration Research Laboratory at University of Miami Bascom Palmer, led by Dr. Byron Lam, and the genetics labs at UM’s John P. Hussman Institute for Human Genomics, led by Dr. Margaret A. Pericak-Vance, Dr. Jeffery M. Vance and Dr. Stephan Züchner, discovered the genetic source of blindness in my family and deciphered the pathway from that gene to disease. Their monumental work has brought the promise of treatments and cures into focus.

Before my vision fully faded, I met Dorothy, God’s most beautiful angel, and we quickly fell in love. Graceful, wise and unfailingly strong, Dorothy was often my guide, and always my companion, as I confronted the fears, frustrations and practical realities of a world going dark. With her, I learned to live a blessed life as a blind man.

Five years after we married, we agreed we wanted to raise children together, and shortly thereafter we celebrated the miracle of a pregnancy. Two months later we met with a doctor and discovered the magnitude of that miracle. Not one, not two, but three babies on the way. Lily Louise, Phineas James and Thaddeus Johnston were born on September 14. They instantly became our world—and my reason to see again.

http://thechart.blogs.cnn.com/2011/0...sion/?hpt=Sbin