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Julie Anderson

A Converstation with Clinical Trial Participant, Julie Anderson

Member profile: Julie Anderson
A Pioneering Role as a Clinical Trial Participant

WHEN IT HAS come to fighting blindness, Julie Anderson has been a warrior. She has served as president of the Foundation's Minneapolis Chapter for 10 years, chaired and co-chaired the Twin Cities VisionWalk, and spoken at a number of local and national Foundation events including Day of Science and the Visions Conference. For Julie, supporting and promoting sight-saving research is not just her passion - she's making it part of her legacy.

So when Julie learned that a clinical trial for Neurotech's encapsulated cell technology (ECT) for people with retinitis pigmentosa would be conducted in her home town of Minneapolis, at the University of Minnesota, she contacted them immediately to see if she could take part in the study. Julie vividly recalls the moment at the 2007 Day of Science when she first heard that one of the Neurotech trial sites would be in Minneapolis. "During the presentation on the Neurotech clinical trials, they showed a map of the U.S. with stars marking the trial center locations. And lo and behold, Minneapolis was one of the places with a star. I felt elated. I had no reason to believe that I would qualify for the study, but I felt in my heart that I would."

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Julie Anderson Julie was the first candidate screened at the University of Minnesota for the Phase II/III clinical study. She was tested and examined for 11 grueling hours. "I found out at the end of the day that I was a good candidate and would probably qualify for the study," she says. "I cried several times after being notified that I was selected. I cried when they told me I was in. I cried when the Foundation's Midwest office called to congratulate me. I even cried while I completed all the study paperwork. They were all happy tears."

Ultimately, 150 people participated in three Phase II/III clinical trials for Neurotech's ECT. Two of the studies were for people with retinitis pigmentosa and other related conditions. A third trial evaluated the treatment in people with dry age-related macular degeneration. Each participant had an ECT, a tiny capsule the size of a grain of rice, implanted in one eye. The ECT contained retinal cells that provided sustained delivery of a vision-preserving protein to the retina.

Naturally, most Neurotech clinical trial participants were a little nervous about undergoing outpatient surgery to have the experimental device placed into their eye. But not Julie.

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I was so excited about getting the treament and possibly stopping the vision loss, i didn't have any apprehension about the surgery. Other people were afraid for me. I'd look at them like they were crazy. I wasn't nervous at all. "I was so excited about getting the treatment and possibly stopping the vision loss, I didn't have any apprehension about the surgery," she says. "Other people were afraid for me. I'd look at them like they were crazy. I wasn't nervous at all. My husband in the waiting room was more nervous than I was. The recovery took a week, though I had big ugly red eyes for a month or so."

For the next two-and-a-half years, Julie was required to make approximately 20 visits to the University of Minnesota for tests and examinations. Sometimes the appointments were short and involved only two or three tests - other visits lasted several hours while she underwent as many as seven tests.

Julie admits that she had high expectations for the treatment. While the clinical trial investigators told her that the trial was to test if the ECT would slow or halt her vision loss, she held out hope that it would restore vision. "I could not imagine that the trial would end up any other way than perfect or positive. I had hopes that the treatment would restore my vision, even though no one ever told me that was a possibility. But that was where my brain went," she says.

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At the end of the trial, Julie learned that the ECT did not appear to have a measurable impact on her visual acuity or peripheral vision, though researchers observed a thickening of her treated retina, which might indicate that the ECT was keeping those retinal cells healthier than those in her untreated eye. Her results were consistent with the overall results for other people affected by RP and other inherited retinal conditions. For participants with dry AMD, the ECT appeared to have a more dramatic effect - it slowed the progression of vision loss.

Before, during, and after the trial, friends and family told Julie that she was brave for participating in the Neurotech clinical trial. But because Julie was losing her vision, she felt like she wasn't being brave - it was simply a great opportunity for her to protect her eyesight. However, after the trial, her perspective changed. "I was braver than I gave myself credit for. I felt like less of a Guinea pig and more of a partner in advancing research. I feel like I am having a positive effect on the future because I am helping researchers better understand what the ECT can do, even if I didn't benefit directly."

For Julie, it has always been important to take a leadership role in finding answers to retinal degenerative diseases and participating in a clinical trial has been an active way for her to lead. "As a chapter president I am setting an example for our members, and I think my participation sets a good example for my children of how to handle adversity when it presents itself. You can find a closet to hide in or you can get involved and do something about it."

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