Jean Burns was diagnosed with Parkinson’s disease (PD) in 2003. Since then, she has devoted much of her time to clinical trial participation, and to advocating for people to volunteer for research. She frequently addresses the topic on PDPlan4Life, a blog she keeps with friend Sheryl Jedlinksi. Jean is a member of the Patient Committee of the Parkinson’s Progression Markers Initiative (PPMI), MJFF’s landmark biomarker study. This month, she attended PPMI’s Annual Meeting. Below, she provides her takeaways from the unique perspective of a Parkinson’s patient at a meeting of scientists dedicated to solving her disease.
I was in awe, surrounded by so many brilliant and dedicated scientists, all with the shared goal of furthering PPMI, and the critical search for a biomarker.
I attended the PPMI meeting with two other members of the Patient Committee and we were graciously welcomed and invited to ask questions or make comments. At first I felt apprehensive about speaking out in a room full of experts, but I got over that pretty quickly. I felt like the best message I could share was to say to researchers, "You have untapped help. Involve the patient advocates in your community. We have many contacts and will work with you get the word out about clinical research. Use us. We are willing and anxious to get involved. We are the ones living with this disease twenty-four, seven, and so many of us are devoted to doing what we can to help find a cure.” Quite a few of the scientists in attendance came up to me and thanked me for speaking out and giving them the patient perspective. Without us, they said, they would have no way to move forward with their research.
At one point, scientists presented data from a finger-tapping device that is used to measure dexterity in an ancillary study in PPMI. I had used this device in a previous study myself, so I was able to offer some insight into my experience. The team at Kinetics Foundation (who is co-sponsoring the use of the device in PPMI) was very interested in my experience, and I even got a nice note from the Foundation’s founder afterwards thanking me for my input.
I was also struck by a presentation from another researcher who discussed some of the early, non-motor symptoms of PD, which I think I experienced prior to my own diagnosis. This was a real eye-opener. It just makes me want to participate in more studies to see how I can help.
I’d like to close with a huge thank you to everyone involved with PPMI. Thank you for including me in this important meeting. Thank you for your dedication and hard work, and for your enthusiasm and energy. Thank you from the bottom of my heart for all that you do to help people like me, people who live with this disease.
You give us hope.