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Steav Bates-Congdon on Young-Onset Parkinsons: "What's important is not to give up"

Steav Bates-Congdon on Young-Onset Parkinsons: "What's important is not to give up"

In the years following his diagnosis of young-onset Parkinson’s disease (PD) in 1997, Steav Bates-Congdon, 61, an organist and musical director at a 12,000-member church in Charlotte, North Carolina, asked his neurologist about clinical trials; unfortunately he didn’t have success connecting to trials in his area. That is, until the launch of Fox Trial Finder.

A long-time supporter of The Michael J. Fox Foundation for Parkinson's Research (MJFF), Steav found Fox Trial Finder on the Foundation’s home page shortly after the tool was launched in July 2011. After visiting the site and completing his profile, Steav was heartened to see the breadth of current research on PD — and to find several potential trial matches.

He quickly connected with a trial team and took part in the screening process — only to learn, with disappointment, that he did not meet the criteria for participation in that particular study.

Steav, however,  is philosophical about his continuing search for trials that need him. “I can’t donate millions to fund Parkinson’s research,” he says, “but I can participate in clinical research. This is one donation I can make. It’s real life and real science, and the truth is that we won’t always qualify for the trials we’re interested in first. What’s important is not to give up — you have to keep looking for the perfect match.”

To help spread the word about Fox Trial Finder, Steav is also tapping into his own extensive network of friends and family and encouraging them to register for Fox Trial Finder. His husband, Bill, has already registered on Fox Trial Finder as a control participant.

Steav believes that people are simply unaware that clinical trials for Parkinson’s need them – whether they have PD or not. Thanks to Steav, more and more people are learning about the importance. “Clinical trials are the only way we’re going to get anywhere in terms of progress toward improved treatments, and, eventually, a cure,” he sums up. “We need the full engagement of the PD community, and that of their families, friends and communities.”

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