Guest blogger Peter Burne is a member of the Parkinson’s Progression Markers Initiative (PPMI) Patient Council. Peter recently attended the annual PPMI meeting in New York City. Below Peter shares his impressions from the meeting and why he decided to get involved.
Early in May I had the opportunity to attend the Parkinson’s Progression Markers Initiative (PPMI) annual meeting held in New York City. PPMI is a five-year international study sponsored by The Michael J. Fox Foundation (MJFF) to identify biomarkers that reveal the progression of Parkinson’s disease (PD). A biomarker is a substance, process or characteristic in the body that is associated with the risk, presence or progression of a disease. A good example of a biomarker is high blood pressure for potential cardiovascular disease.
There is currently no known biomarker for PD. Finding one would provide scientists with a critical tool to predict, objectively diagnose and monitor the disease. It would also allow researchers to determine which medications work and which do not, important information for pharmaceutical companies that might invest in developing drugs to treat Parkinson’s. Continue reading “All These People, Working for Us” »
This guest post comes to us from Foundation friend, Karen Jaffe, MD. Karen is an OB/GYN in Cleveland, Ohio, and a member of MJFF’s Patient Council. She and her husband, Marc, are both Team Fox members.
I am not a complete ‘newby’ to this world of Parkinson’s heroes, but I am continually amazed at how often I find another one stepping up to the plate. Of course, each and every one takes their lead from Mr. Fox who has a determination that seems boundless.
But not far behind are the men and women who have made the tough decision to enroll in the Parkinson’s Progression Markers Initiative (PPMI). Why? Because, in my opinion, this study holds the key to the cure and they should be commended. MJFF has put their money, their time and their scientific expertise into this study, but the study participants have given each of us with Parkinson’s disease something even more valuable: hope for a possible cure. Continue reading “Two Heroes, Thousands of Miles Apart, Step Up for PPMI” »
Similar to many Parkinson’s patients, the road to diagnosis for Denise Dvorak was a long one. But once she finally found out that the symptoms she was experiencing were Parkinson’s disease, this 44-year-old life-long educator quickly set out to find out more about her condition.
Her search for knowledge led her to The Michael J. Fox Foundation’s website, where she immediately noticed different ways that she could take action. As a newly diagnosed patient, the Parkinson’s Progression Markers Initiative (PPMI) caught her eye. Sponsored by The Michael J. Fox Foundation for Parkinson’s Research, PPMI is a landmark study to identify biomarkers, necessary tools to evaluate Parkinson’s disease progression — and to develop disease-modifying therapies. Continue reading “A Personal Investment in PPMI” »
In the Spring 2012 issue of “Accelerating the Cure,” we hear directly from PPMI participant Jon Surine.
When I was first diagnosed with PD in 2010 after consulting my physician about a mild tremor, I wasn’t completely surprised. I wasn’t the first in his family to hear this news from my doctor — both my mother and father-in-law had PD — so I was already familiar with some of the realities of living with the disease. Continue reading “Jon Surine: “I Don’t Want to Be Defined by Parkinson’s, I Want to Help Define It”” »
In the Spring 2012 issue of “Accelerating the Cure,” we hear from Chris Coffey, PhD, director of the Clinical Trials Statistical and Data Management Center at the University of Iowa. On behalf of Team Fox, he ran — and finished — the 2011 Bank of America Chicago Marathon in 5:02:59 on October 9, 2011.
I head a research group at the University of Iowa. One of our projects is to manage the analysis of data being generated by the Parkinson’s Progression Markers Initiative (PPMI), The Michael J. Fox Foundation’s landmark biomarker study. The lack of biomarkers of disease progression is a major hurdle in the development of new treatments for PD. Validated biomarkers of disease progression would dramatically accelerate PD drug development.
Like a lot of researchers, I’ve been inspired by MJFF. I knew early on that I wanted to go beyond my scientific relationship with MJFF — I decided to run a marathon to raise funds as part of Team Fox. Reading through the inspirational stories from other Team Fox members, I get the sense that I’m not the typical participant. Many have a personal connection to the disease. Although I know people who have had PD, I don’t have an immediate family member with the disease, nor have I ever been a caregiver for someone with PD. Continue reading “Partner Scientist Runs Marathon for Parkinson’s” »
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 her latest video entry, she reflects on an inspirational PPMI event where she had the opportunity to speak with others who have volunteered to take part in the study. Debi was deeply moved by their stories of willingness.
Posted by Debi Brooks on Wednesday, 14 March, 2012
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. Continue reading “Debi’s Blog: Citizens for a Cure” »
Posted by Nate Herpich on Tuesday, 14 February, 2012
The Cleveland Clinic is joining an ongoing effort from personal genetics company 23andMe to recruit 10,000 Parkinson’s disease (PD) patients to contribute their DNA to a research database, toward the end goal of better understanding the role genetics plays in PD. The Michael J. Fox Foundation (MJFF) is collaborating with 23andMe to publicize this initiative to the PD community.
Patients who volunteer for the study will be asked to provide a saliva sample for DNA analysis and participate in online surveys about their experience with PD. These data will in turn be collected and presented it in a scientifically meaningful way to the research community at large. By leveraging DNA technology, the Internet, and patient participation, the initiative aims to accelerate findings to enhance an understanding of PD, a critical step in developing therapies to treat the disease. Continue reading “Cleveland Clinic Joins 23andMe, Michael J. Fox Foundation in Search for Genetic Clues to PD” »
