Most scientific meetings include posters by scientists, which summarize their most recent experiments. The 3rd World Parkinson Congress is unique in that it features posters by advocates with Parkinson’s alongside those by scientists.
PDF is proud to report that our team had 13 posters at the WPC! This included posters from seven PDF Research Advocates (one doubled up), three PDF staff members, and two PDF-funded researchers. Yesterday we were able to catch up with a few of them. Here’s a summary:
Poster: www.DiscoverMI.org – Helping Patients with Parkinson’s Disease Get a Clear View of Modern Molecular Imaging Technology
As a PDF Research Advocate, Fred found a role serving on the Patient Advocacy Advisory Board to the Society for Nuclear Medicine and Molecular Imaging. This poster describes the organization’s new website, www.discovermi.org, which helps people to navigate questions if undergoing imaging tests for a variety of health conditions. How is this relevant to Parkinson’s? Various tests such as the DaTscan are used in Parkinson’s. For example the DaTscan can help to confirm whether a person has Parkinsonism versus a similar condition such as Essential Tremor. This scan cannot differentiate between classic PD and atypical Parkinsonisms, so it’s not often used in doctors’ offices . Yet some people with Parkinson’s may undergo a scan if their diagnosis is unclear. And more importantly, as Fred noted, people with PD may undergo scans as part of clinical trials to help study the brain. In those cases, this website can serve as a helpful resource.
Patti Meese, PDF Research Advocate, Scottsdale, AZ
Poster: “My Life” and the Positive Power of Singing with the Tremble Clefs
Patti Meese has found several positive and creative ways of living with Parkinson’s and one of those that has become most meaningful to her is music.
When she joined the Tremble Clefs a few years ago, a music group for those with Parkinson’s, she found it helped some of the speech issues associated with Parkinson’s disease.
Not only that, it introduced her to a new group of people with similar interests.
To learn more about the Tremble Clefs and how you can get involved, visit
Karlin Schroeder, Senior Advocacy Relations Manager, PDF, and Thelma Balbes, PDF Research Advocate, Carlsbad, CA
Poster: Clinical Research Participation Among People with Parkinson’s: Examining the Importance of Travel Assistance When Deciding to Join a Study
Have you ever wanted to join a clinical study but didn’t sign up because you didn’t have a way to get there? As PDF found when working with advocates in its Parkinson’s Advocates in Research program, this is a common complaint. PDF conducted a survey of its Research Advocates and found that travel is a barrier to clinical research participation, which in turn delays research and the development of new treatments. The poster recommends that sponsors of Parkinson’s clinical trials look at this issue and consider solutions such as travel reimbursement, to help people participate in the trials they are interested in and speed up research. To view the poster, click here.
Poster: PAIR up for Parkinson’s Research: the Impact of Clinical Research Education Forums on Study Inquiry and Enrollment
In the past several years, PDF held clinical research educational forums in several cities in the US, bringing together people with Parkinson’s and loved ones, with local scientists who run trials. How did those forums impact knowledge and clinical study participation?
This poster examined the impact of the forums on enrollment in clinical trials, finding that people who attended forums increased their knowledge and about a third inquired about clinical study participation afterward. To view the poster, click here.
Beth Vernaleo, Ph.D., Senior Manager, Research Programs, PDF
Poster: A Ten-year Follow-up Analysis of Investments Made in Parkinson’s Disease Research
What’s the impact of PDF research funding? Dr. Vernaleo studied this issue by investigating past PDF grants – what happened to the projects and scientists after PDF funding. Since 2000, PDF has funded more than $11.7 million to 231 scientists. This includes seed grants to help new innovative projects get off the ground, training fellowships and research grants to senior investigators.
Dr. Vernaleo found that on average, $5 was returned for every $1 spent. In conclusion PDF funding led not only to highly trained scientists and clinicians, but also to further funding for Parkinson’s research.
Here are other posters presented, not featured above.
Garry Ballenger, PDF Research Advocate, Charlotte, NC
Effect of Organized Physical Activity on the Quality of Life of People Living with Parkinson’s (Survey)
John Baumann, PDF Research Advocate, Louisville, KY
Reclaiming Positive Perspective: Secrets to Success Living Life to the Fullest with Parkinson’s Disease (PD) and Shou… Shou… Bang: Moving More Quickly Through the Stages of the Emotional Rollercoaster In Order to Embrace Your Parkinson’s Disease on Solid Ground
Sue Dubman, PDF Research Advocate, Tewksbury, MA
Enabling Research through Informatics: A Researcher Turned Patient’s Point of View
Jackie Hunt Christensen, PDF Research Advocate, Minneapolis, MN
“Do I Look Like I Care?” – Parkinson’s Disease and its Potential Effects Upon Relationships (Survey)
Pam Quinn, PDF Research Advocate, New York, NY
Why Dance is a Useful Form of Therapy for Parkinson’s Disease
Diane Cook, PDF Research Advocate and member People with Parkinson’s Advisory Council, Denver, CO
Six Month Interim Report on the Effectiveness of a Self-efficacy Learning Program for Newly Diagnosed Parkinson’s Disease (PD) Patients and Their Care Partners
Claire Henchcliffe, M.D., D.Phil., PDF-funded researcher, Weill Cornell Medical Center
Prevalence and Impact of Parkinson’s Disease Symptoms: A Patient Survey Across the Range of Disease Severity
Roy Alcalay, M.D., PDF-funded researcher and Medical Advisory Committee, Columbia University Medical Center
Neuropsychological Performance in LRRK2 G2019S Carriers and Non-carriers with Parkinson’s Disease