Lynn Fleming, of Naperville, Illinois, discovered Fox Trial Finder in a neurologist’s waiting room last winter. By chance, she picked up the December 2011/January 2012 issue of Neurology Now—with Michael J. Fox as the cover story. In it, he discussed his Foundation’s research progress and efforts to engage the Parkinson’s community—especially through the then-recently launched clinical trial matching tool, Fox Trial Finder. Lynn was inspired to take action.
Not long before, her sister Nancy had gone public with her Parkinson’s, after quietly struggling with the disease for several years. One of five siblings, Lynn had been discouraged by the many challenges her younger sister faced in managing her PD. But Lynn now realized there was something she could do—to help Nancy and others like her. She could participate in clinical research as a control volunteer. Lynn created a profile on Fox Trial Finder and began exploring the trials nearby in need of someone like her.
She soon found a potential match at Rush University Medical Center. She says, “I feel fortunate to be near Chicago—there are so many trials recruiting.” She connected with the trial team conducting a study to look at changes in the intestine, to see if that’s where Parkinson’s makes its first appearance. Both Lynn and her husband expressed interest in the study, but as he was taking a certain medication, only she was eligible to participate.
The study’s demands weren’t insignificant. Over the course of her three visits to Rush, Lynn submitted blood and tissue samples, and underwent a neurological and a flexible sigmoidoscopy (a minimally invasive procedure used to see inside the sigmoid colon and rectum). She had homework, too—collecting urine and stool samples over a 24-hour period. Nonetheless, she says it was a positive experience and worth any short-term discomfort. She says, “Dr. Ali Keshavarzian did each test himself, explaining everything very thoroughly.” Dr. Keshavarzian shared that his sister also had Parkinson’s, which further fueled his desire to understand the cause of this disease.
When Lynn initially learned more about the study’s requirements, she admits she had reservations. To get a second opinion, she discussed it with her gastroenterologist. As it turns out, Dr. Keshavarzian had mentored him, and he spoke highly of him and his research. He was also able to reassure Lynn about the procedures she would undergo, and the samples she would be contributing.
Lynn shared her experiences with Fox Trial Finder and the study with her siblings, and is eager to contribute in any way she can. A study of Parkinson’s patients and their siblings may be under way soon at Rush. Lynn says the trial team knows to give her a call if she and Nancy can help.
“I’ve gained so much more than the knowledge I should eat more bran,” she says of the study. “You don’t do this for yourself, you do it for the future. It’s evolutionary. You hope that others won’t have to go through what my sister does.”