Michael J. Fox Foundation Co-Founder and Executive Vice Chairman Debi Brooks has not only been instrumental in conceiving, structuring and fundraising for the Parkinson’s Progression Markers Initiative (PPMI); she also is participating in the study as a control.
This is the first time Debi has volunteered for clinical research, and she is blogging about what she learns along the way. In this post, she reflects on clinical trial participation and the theme of citizenship, thanks in part to the expertise of her daughter Abby.
This morning, as I was getting ready to head to the University of Pennsylvania for the latest of my PPMI study visits, I sat down to breakfast with my young daughters. I wasn’t actually eating with them, as I needed to fast prior to having blood drawn for PPMI. My daughter Abby noticed this.
“Why aren’t you eating?” she asked. I explained to her that I was fasting, because I was going to see the doctor. I didn’t want my breakfast to show up in my blood, I told her. The doctor was going to look at my blood and compare it with the blood of people with Parkinson’s disease, in order to learn more about what causes it.
Abby, who’s currently in the midst of a school unit on citizenship, asked me why I wanted to do this. “You know how you want to do your part at home, in the neighborhood, and at school?” I asked her. “That all of that is part of being a good citizen?” She nodded.
“Well, I go to Philadelphia to do my part.”
Certainly, participating in clinical trials can be a way to give back to a community of people. I’m lucky, it’s easy for me to give my time to PPMI. After all, I work for a Foundation that is prioritizing getting people involved in research. But so many more people are making sacrifices to participate in clinical trials, or, as Abby might say, to be good citizens of the world.
I recently went to an event where I had the opportunity to be inspired by other PPMI volunteers, both those with Parkinson's and those participating as controls alike. I met people from diverse backgrounds, each with their own unique experiences. All had come together for an important call to action — to get involved in clinical research. One husband and wife team, both controls, were inspired by a friend with PD to participate in PPMI. There are a great many stories like this — PD patients recruiting their dinner club buddies, church friends, and doctors to volunteer for clinical research.
I’m confident there will be many more to come. Since launching last July, Fox Trial Finder, our tool to match potential volunteers to the clinical trials that need them, is already bringing new citizens into the fold of clinical research participation, one person, at one trial site at a time. During some down time at Penn, I heard two stories of trial participants who had found PPMI via this tool.
We still have work to do — slow recruitment for clinical trials is a real challenge to making progress in developing drugs for all diseases, including Parkinson's. But with your help, we can tackle this challenge head-on, and move closer together toward realizing our ultimate goal — finding a cure for Parkinson's.