I’ve lost a lot of my sight to retinitis pigmentosa, or RP, and as Dr. Edwin Stone is conducting exciting stem cell research focused on the disease, I began the process of scheduling an appointment with him last summer. Dr. Stone’s home base is the University of Iowa, which is just a two-and-a-half-hour drive from my house in Illinois. When an appointment date was finally offered, I found it a little odd that it was for New Year’s Eve, but I was eager to go, so I said yes.
I should point out that Dr. Stone is a longtime recipient of FFB funding, and that he received its highest research honor, the Llura Liggett Gund Award, in 2012. So, as I was driven to Iowa that cold and snowy morning, I was anxious, to say the least.
I arrived at Dr. Stone’s facility at 7 a.m., and testing began at 7:30—the “typical” tests for those of us with RP, i.e. visual fields, visual acuity, etc. His staff was friendly and professional, and made me feel very much at home. I think I was their first patient that day, as the office was almost eerily quiet when I arrived. By mid-morning, though, the waiting room was buzzing with activity. It felt as if it was any ordinary day, not one of the biggest party days of the year.
Around noon, it was time to meet with Dr. Stone. Because I was at VISIONS, the Foundation’s annual conference, when he was given the Gund Award, I was familiar with Dr. Stone’s work, but I’d never met him. Instantly, I knew I was in good hands, as he unconditionally gave of his time and expertise.
He told me about the work he and his team are doing, specifically the creation of new, healthy photoreceptor cells to replace the defective ones in a typical RP patient. They do that by turning the blood or skin cells of a person into stem cells, which, in turn, can be transformed into whatever cells are needed. Dr. Stone also described a new research facility being built on the university’s campus. Due to be finished in March, it will be of “NASA quality,” in terms of equipment and scientific standards, he told me.
Before I left, a member of Dr. Stone’s staff extracted blood from me to confirm the prior identification of the gene mutation that causes my RP. She also took some skin from the back of my right arm to begin the stem cell process.
While there’s no guarantee that Dr. Stone’s work will result in the restoration of sight, it was impossible to ignore the optimism in his and his colleagues’ voices. His goal is to be able to place healthy photoreceptor cells in patients’ eyes in less than 10 years, but hopefully much sooner.
Personally, the experience helped put the work of FFB, including the invaluable assistance of our volunteers, into perspective. Those of us associated with the Foundation try to pay attention to the latest research news, but until I’d made the trip to Iowa, everything was a bit “abstract.” I couldn’t really grasp how it all fit together.
My visit with Dr. Stone changed that. It made me feel that the money we raise for the cutting-edge work done by countless researchers—many of them moving potential treatments toward clinical trials—really does make a difference. And when that chunk of skin was removed from my arm, it really hit me that great things are actually happening.
It’s more important than ever that the Foundation increase its efforts to raise money for research. The experience I had in Iowa is happening, in similar ways, in research facilities around the world, thanks to those who’ve contributed thus far. And because FFB has a topnotch Scientific Advisory Board, which thoroughly examines every grant request, it can ensure that the money raised goes to those who will do the most good.
I always encourage my fellow Foundation members to stay in tune with the phenomenal research going on through FFB funding and otherwise, and to do what they can to promote awareness in their communities so that we can continue to expand our donor base and the FFB family. The Foundation has always been, and will continue to be, a volunteer-driven organization. And the money it raises will enable Dr. Stone and many others like him to move us closer and closer to our ultimate goal.
Picture, above: John Corneille and his wife, Pam, at a recent FFB event.