Source: YouTube screen capture
Jean Burns's strong belief in the benefits of clinical trials began when years ago she was researching for something to help with her Parkinson's disease, an incurable condition. She first noticed an intermittent tremor in one finger of her left hand. Six months later she became aware of the concept of clinical trials and then found out about a trial on GDNF gene therapy that had the potential to slow down her disease.
Jean learned that clinical trials have very strict requirements and criteria that participants must qualify for before being accepted into a trial. And equally important, a patient should really understand everything about a trial before deciding if it is something to commit to.
After reading about the potential things that could go wrong during her treatment, Jean nearly refused the trial, but her rapidly declining health convinced her she had to take the risk.
During her five year commitment to the trial, she underwent MRI-guided brain surgery, nine MRIs, three PET scans, and three lumbar procedures.
Jean's experiences with clinical trials has made her a strong advocate. She believes that by volunteering for clinical trials, you don't have to sit back and simply allow a disease to take over your body. For Jean, it is her "way of fighting back," and also gives her the ability to contribute to the growing body of knowledge about a particular illness – a gift to the world and to many others who will be diagnosed with a disease in the future.
Although it is anyone's right to halt participation in a clinical trial at any time, she strongly stresses the idea that the more people that stay on for the duration of a trial, the more we can learn about the disease or the possible cures.
Jean has served as the co-Chair of the Advocates for Parkinson Committee for the fourth World Parkinson Congress, was a member of the WPC 2016 Steering Committee, and presented at 5th World Parkinson Congress in Kyoto.
"Before me, there were hundreds and thousands of other people with Parkinson's who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications."