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Why Not Participate? One Patient’s Perspective on Genetic Research

Why Not Participate? One Patient’s Perspective on Genetic Research

For many, the decision to participate in genetic research is not a trivial one. But for Gary Schmitz, he didn’t think twice. “For me,” he says, “the question was why wouldn’t you want to contribute?”

Not long after The Michael J. Fox Foundation, together with personal genetics company 23andMe, announced a new research community for Parkinson’s patients, Gary signed on. In January 2010, he became part of what would become the world’s largest PD community. He shared his spit, using 23andMe’s DNA kit.

“It was easy to do and didn’t require much from me,” Gary says. He found the results from his test interesting—and comprehensive. Diagnosed with Young-onset Parkinson’s at 38, Gary, now 50, learned he was only at a slightly higher than normal risk for developing PD. He was most surprised by the amount of information he received—about his maternal and paternal bloodlines, food preferences, muscle performance. Happily, he learned he was not likely to go bald, which he hopes is right. “I even found out if my ear wax was moist or not,” he says.

Learning more about his genetic profile was actually something of a relief to Gary. Since he had little genetic predisposition to Parkinson’s, such as carrying the LRRK2 mutation, he now worries less about his two children developing Parkinson’s. But even if his results had been different, having that knowledge makes a difference, he says. “If you’re at risk for something, then you can do something about it. You may know you need to see a certain type of doctor twice a year versus once.”

Participating in genetic research was only the beginning for Gary. Since then, he completed a profile on Fox Trial Finder, The Michael J. Fox Foundation’s clinical trial matching site. Through this tool, he found—and completed—a study on cognition and Parkinson’s at the University of Texas Southwestern Medical Center, which is near his home in the Dallas area. He also connected with Ceregene’s CERE-120 trial, for a potentially neuroprotective gene therapy. However, as he was being screened for this trial, Gary learned he had suffered a small stroke at some point. While this made his participation in the trial no longer possible, it was information he didn’t have before. And it hasn’t dampened his determination to participate in future clinical trials—he’s still looking to contribute wherever he can.

Like his attitude toward genetic research, Gary wonders why you wouldn’t participate in clinical research. “I want everyone to get involved through Fox Trial Finder,” he says. And he’s encouraging friends and family members to sign up.

Gary has also taken action through Team Fox—“to do something positive,” he says. In Texas, he has hosted several Team Fox events, including a pancakes breakfast and a shopping event on his town’s Main Street. His sister in Milwaukee, Wisconsin, has gotten involved, too. She hosted a comedy night and an event at a Milwaukee Brewers’ game.

Through Team Fox and clinical trial participation, Gary is happy to do his part to help speed a cure and support MJFF’s efforts. “The Michael J. Fox Foundation is a sign of hope for me,” he says. “I know they’re working in one direction—toward improved treatments and a cure. That’s just what I need.”

If you have PD, you are entitled to a free lifetime membership to 23andMe, and will receive detailed, personalized reports indefinitely through the 23andMe Personal Genome Service™. You can also share your experiences directly with others in the online community.

Along with genetic testing, learn what other clinical trials for which you might be eligible by creating a profile at Fox Trial Finder, the Foundation’s clinical trial matching tool. And if you know your genetic status, be sure to answer the question about genetic testing.

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