Why Not Participate? One Patient’s Perspective

This post first ran a few days ago on the Michael J. Fox Foundation blog. We liked it so much we’re re-posting it here. Please take a look and, if you have Parkinson’s, think about joining Gary and thousands of others and sign up and be part of our Parkinson’s research community.By Lauren AndersonFor 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 and 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 Parkinson’s 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.”
For Father’s Day If your Dad has Parkinson’s, show him you care by making a long-term investment in his health and the future of Parkinson’s disease research. At no cost, give him access to his genetic data and the growing Parkinson’s Research Community (~7,500 strong!) at 23andMe. Visit www.23andme.com/pd to sign him up.
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.”
Editor’s note: Pending an FDA decision, 23andMe no longer offers new customers access to health reports referred to in this post. Customers who purchased prior to November 22, 2013 will still be able to see their health reports, but those who purchased after that time will not. Those customers will have access to ancestry information as well as access to their uninterpreted raw data.
  • Kate

    My dad won’t do it. He’s afraid of it. He says it’s crazy and doesn’t work and that it’s a waste of time and effort, which means he’s scared. I think it was worth it. It is definitely interesting. If for entertainment purposes only, it was worth it.

  • Joseph H

    Why Not Participate? $299.00, that’s why. :p

  • Karen Schnipke

    I found this to be very interesting. What I find to be more interesting is Gary’s last name. My mother was a Schmitz. I to have PD maybe there is some kind of relation there.

  • Ruth S

    Joseph H – I believe 23andMe do not charge PD patients for the service. I don’t know what the policy is for first degree relatives – considering their usefulness for PD research, a reduced price service would surely be appropriate.

    • ScottH

      Thanks for the note. Yes indeed there is no charge for PD patients enrolling in our PD research community. We will soon have 10,000 patients enrolled, an amazing number that will help us with the research we’re doing on the causes and potential treatments for Parkinson’s. Presently we are not enrolling first-degree relatives, except for in certain cases. For a limited time, 23andMe is offering its Personal Genome Service for free to the first-degree blood relatives of individuals in the PD community who carry either the LRRK2 G2019S variant or the GBA N370S variant. For more information or if you have questions email us at: pd-help@23andme.com