Parkinson's Advocates in Research
You can influence Parkinson's research. How? By working with Parkinson's Advocates in Research.
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The Advocate Report
Since 2008, PDF's Parkinson's Advocates in Research Program (PAIR) has been training its graduates, known as our Research Advocates, to influence Parkinson's research and speed new and effective treatments.
PDF Research Advocates are active around the US educating their communities about clinical study participation; working with industry and academia to ensure the voices of people living with Parkinson’s are heard; and overall making a difference in Parkinson’s disease research.
Browse the Advocate Report(s) to read about these inspiring individuals. Interested in participating in the Learning Institute? Read about updated training and application dates.
The Advocate Report: Massachusetts.
One addition to the PAIR team of research advocates is Sue Dubman, of Boston, MA. For the first year after Ms. Dubman received her diagnosis of Parkinson’s in 2008, she said she “floated down the river of denial!” Yet it did not take her long to get involved with helping the Parkinson’s community in a way that powerfully leverages her 15 years of professional experience in government, health, information technology and clinical research.
She works with organizations such as the Clinical Data Standards Interchange (CDSIC) on data standardization — that is, on finding ways to coordinate data collection across research studies testing new therapies.
Ms. Dubman saw an opportunity when she read about PDF’s three-day research advocacy training, the annual Clinical Research Learning Institute. As she describes it, “When I was at the National Cancer Institute, I worked with many patient advocates so I was already familiar with what they do and how important they are. As a person with Parkinson’s, I have a vested interest in wanting to see treatments to stop progression and improve quality of life for people living with Parkinson’s.”
She participated in the training in October 2010. Today, just five months into her new role as a Parkinson’s research advocate, she has already found several ways to impact data standardization for Parkinson’s. She says that the problem is that Parkinson’s researchers often collect and label data in different ways.
For instance, one study will define its young-onset PD participants as people younger than age 40, and another will say they should be defined as everyone under age 50. Down the road, there is no way to compare and share information across studies because the measurements are too different.
Ms. Dubman is working to solve this problem through her service with the Coalition Against Major Diseases (CAMD)- Critical Path Institute, a nonprofit institute which brings together industry and government agencies to improve the development new therapies by streamlining data. She has also reviewed new data standards created by the National Institute of Neurological Disorders and Stroke (NINDS) — a branch of the National Institutes of Health (NIH) that funds PD research — and provided her expert feedback on behalf of PDF and the Parkinson’s community.
Why is this work important? As Ms. Dubman puts it, “Data standards could speed up innovation, by allowing scientists to focus on the bigger picture rather than administrative details. We all want new treatments more quickly, and this is one way to improve the process.” As she uses her combination of professional expertise and personal dedication to the cause, so does she help increase the voice of people with Parkinson’s — exactly the aim of the PAIR program.
The Advocate Report: Michigan
Clinical Research Advocate Works Hard to Raise Awareness in Michigan
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.
To get in touch with the Michigan Parkinson Foundation, call (800) 852-9781 or visit www.parkinsonsmi.org.
The Advocate Report: Illinois
Chicago Advocates Honor "Partners in Progress"
It is because of individuals who have stepped forward to take part in clinical research studies that any Parkinson’s medications are available today.
This is the sentiment of the graduates of PDF's Clinical Research Learning Institute, including Frances Waldynski, a former special education teacher who hails from the suburbs of Chicago, IL. So, this past April, a group of Learning Institute graduates, including Ms. Waldynski decided to recognize “partners in progress” — individuals from the Chicago area who have participated in trials.
The graduates joined forces with local doctors, clinical trial coordinators and PDF staff, to organize an educational forum entitled, Partners in Progress: The Essential Role that People with Parkinson's Play in Clinical Research. In addition to honoring research participants, the event was designed to increase participation by people with Parkinson’s in the cutting-edge studies taking place in the area. As the graduates note, a shortage of clinical research participants is a key factor in the delay of testing and approval of new Parkinson’s medications.
The first session featured research teams from three nearby medical centers, including Rush University Medical Center (a PDF-funded research program), represented by Christopher G. Goetz, M.D.; Northwestern University, represented by Tanya Simuni, M.D.; and University of Chicago Medical Center, represented by Un Jung Kang, M.D. Each team spoke about recent findings and opportunities for people with PD to get involved. Next, a panel of people with PD spoke about their personal experiences volunteering for trials.
Ms. Waldynski, who has participated in over 13 trials herself, said, “I think this event raised awareness of the breadth of clinical trials available. Many people think that participating in a clinical trial means taking an experimental medication for a terminal illness, not for a chronic disease like Parkinson’s. But there are so many trials to test important new Parkinson’s drugs and study its symptoms.”
As the event came to a close, clinical trial participants were singled out with a gift of tulips. As one Learning Institute graduate noted, “I stood by the door and observed the 200 or more people in the room — those living at all stages of Parkinson’s, and their family members. It reminded me of why we planned this program — to help to minimize disability and improve quality of life for people with Parkinson’s, so they can be with their families and friends."
