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“I participate because it is the right thing to do, for myself, for my children, and for the millions of people who have Parkinson’s disease. Without participation there will be no cure.” –Mike, Diagnosed 7 years
Recently Diagnosed with Parkinson's Disease?
If you have recently been diagnosed with Parkinson’s disease (PD) understanding the disease, and learning about the resources available to you, are good first steps.
Clinical Research News
Clinical Research Advocate Works Hard to Raise Awareness in Michigan
Apr 15 2010
Carolyn Weaver, of Freeland, Michigan, is taking her state by storm with outreach and education about Parkinson’s disease (PD) clinical research. Ms. Weaver is a 2008 graduate of Parkinson’s Disease Foundation (PDF) annual Clinical Research Learning Institute, which educates participants about the ways in which people living with PD can contribute to the development of new treatments for PD and perhaps even hasten its cure.
After her 2008 training, Ms. Weaver pitched a new initiative to the Michigan Parkinson Foundation (MPF), a group that serves the Michigan PD community. Her proposal: she would travel around the state, bringing a clinical research presentation to all 50 of MPF’s support groups.
To date, she has visited 10 of them, including the young-onset support group for which she serves as co-facilitator. Ms. Weaver uses a PowerPoint presentation developed by PDF that is used by all 65 graduates in communities around the US. This presentation covers the basics of clinical research, resources for people to find studies in their area (such as www.PDtrials.org) and tips for making informed decisions about research participation. She has also separately met with MPF’s support group facilitators, so they can independently educate their own groups.
Ms. Weaver has found that her audiences become particularly engaged when she talks about her own participation in five studies. As she says, “People seem to just be soaking it up like a sponge! Not everyone has access to this information.”
After her presentations, she often goes above and beyond the call of duty, finding potential clinical studies for the people she meets and providing personalized guidance on how they can make informed decisions about participating in trials.
In recognition of her hard work, MPF asked Ms. Weaver to serve on its state board of directors. As MPF CEO, Debby Orloff says, “Carolyn has made such an impact on our groups — letting our members know about the importance of clinical research participation and the resources available to them. It is incredible to see what she has accomplished in one year in educating people about research. We look forward to working with her in 2010!”
Ms. Weaver continues to take her show on the road around Michigan, and is partnering with 2009 graduate Gerald Van Wambeke, J.D., of Ann Arbor, to find new ways to increase awareness of clinical trial participation around their state.
This article was originally published in the Spring 2010 edition of the Parkinson's Disease Foundation (PDF) newsletter, News & Review. It is reprinted, in its entirety, with permission from PDF. For other publications, please visit www.pdf.org.
Q&A with Carolyn Weaver
Q. How did you become interested in participating in Parkinson's disease clinical studies?
Carolyn Weaver: I wanted to learn more about Parkinson's disease. I felt if I participated in research not only could I help to find the cure, but I could maybe help myself to a better quality of life with PD.
Q. What have you learned and how have you benefited from your involvement in clinical research?
CW: I have learned so much about PD and my personal challenges with PD and how to handle them. My doctor is wonderful, but when you can spend the kind of time you get to spend with medical professionals when you are involved in a study, you can't help but learn from them. I think for me personally I was able to communicate better with my doctor because of what I have learned while in studies.
Q. What is the most important message you want people to take away about participating in clinical trials?
CW: We are all in this together, and "the gift of participation" is a wonderful thing to give. I don't have forever to find the cure and I don't think other people with Parkinson's do either. I hope people reading this newsletter will join me during Parkinson's Awareness Month and make a decision to participate in clinical trials and let other people with Parkinson's and their families know how they can participate too!
Carolyn Weaver is a 2008 gradute of the Parkinson's Disease Foundation's annual Clinical Research Learning Institute.
