I Want To Understand PD Research, But I’m Not A Scientist!
One of the main goals of the World Parkinson Congress (WPC) is to make the science of Parkinson’s disease (PD) accessible to all attendees including those who do not have formal training in any of the scientific fields that fuel PD research (Biology, Neuroscience, Bio-medical engineering, Data Science etc.). While there are many sessions designed for PD researchers at the WPC, there are also sessions, including scientific sessions, that are tailored for lay people – including those with PD, their care partners, and families. Explaining science to non-scientists, without over-simplifying the research is a challenging task and one that APDA applauds.
It is also a task that is a vital component of APDA’s mission and one that APDA engages in every day. We work tirelessly to provide the support, education, research, and community to help everyone impacted by PD live life to the fullest. While we do everything we can to help improve the daily lives of people with PD, we also believe strongly that the PD community deserves to understand the exciting research progress being made and the tremendous lengths researchers are going to on their behalf. It’s also important for people to understand that they can play a role in PD research via clinical trials and/or supporting research financially.
For those not familiar with APDA’s research strategy, we pride ourselves on funding researchers early in their careers to encourage them to either begin or continue dedicating themselves to PD research, as well as helping established investigators pursue new and novel ideas. Our president and CEO, Leslie A. Chambers has said “We know that our funding allows researchers to jumpstart their ideas and obtain significant pilot data and initial proof of concept. In many instances, this then allows them to get further funding from other funding institutions.”
We try to make this research approachable through our blogs, news articles, videos and broadcasts. Translating research from scientists to our community is one of our key goals.
Check out some of our recent blogs that highlight research wins funded by APDA while explaining the research in understandable terms.
· Precision Medicine for Parkinson’s Disease: Inside Yale University’s APDA Research
· APDA’s New Bridge Funding Awardees for Parkinson’s Research
· Women & PD Research Progress: Catching Up with APDA Researcher Dr. Roberta Marongiu
We strive to explain to our readers not just the results of APDA-funded work, but also the results of all key PD research. Research progress, no matter where it happens or who funds it, is significant for the entire PD community, and the hope and optimism this progress can generate is so meaningful. Here are two examples from the recently published medical literature and how APDA helps to translate these results in news articles in our Newsroom.
· Unique nigral and cortical pathways implicated by epigenomic and transcriptional analyses in rotenone Parkinson’s model (npj Parkinson's Disease). APDA translation: The pesticide rotenone triggers lasting alterations in brain gene activity and epigenetic markers (chemical tags that turn genes on or off).
· Pre-symptomatic Parkinson’s disease blood test quantifying repetitive sequence motifs in transfer RNA fragments (Nature Aging). APDA translation: An exciting development is underway as a new RNA-based blood test could help diagnose Parkinson’s disease (PD) prior to the development of motor symptoms. The work demonstrated a way to target and detect specific sequences contained within transfer RNA (tRNA) for early diagnosis in a simple blood test.
We know the scientific lingo and research concepts can be a lot to process, so another way we try to assure our community that some very promising research is underway is by asking APDA-funded researchers to present their work in terms that can be understood by the lay community. Here are videos from three APDA-funded researchers who are Dr. George C. Cotzias Memorial Fellowship awardees. Each received a three-year career development award given to physician-scientists who are establishing careers in PD research, teaching and patient care. Each researcher explained his/her work in a short, accessible video.
· Dr. Gary Ho
· Dr. Krithi Irmady
· Dr. William Zieger
Longer broadcasts that explain promising research are another component of how APDA strives to translate research results to the PD community. Here are a few examples:
· In this broadcast, Dr. James Liao discusses his research using augmented reality to help freezing of gait in PD and Dr. Ryan Roemmich discusses his research using remote video-based movement assessments to monitor people with PD.
· In this broadcast, Dr. Clemens Scherzer discusses his research on precision neurology which uses massive data streams from genomes, transcriptomes, and longitudinal cohorts to predict and prevent the progression of PD. Dr. Sunil Kumar discusses his research on identifying drug-like ligands that can specifically target and disrupt the aggregation of α-synuclein, a process that is directly associated with the development of PD. Dr. Giulietta Riboldi discusses her research on the discovery of new genetic variants associated with PD.
We hope that our efforts to help the PD community feel connected to the research are helpful. We welcome suggestions for new and different ways to make research content more easily digestible. Feel free to send ideas to apda@apdaparkinson.org.
We look forward to seeing you at WPC where we will learn together about all the new research that impacts PD. Join APDA at WPC on Sunday, May 24, at 1:45 PM for a Day 0/Pre-Conference Session where we will explain the research and science behind motivation in exercise! And please come visit us at Booth 401 – we can’t wait to see/meet you in person!
About APDA:
The American Parkinson Disease Association (APDA) is a nonprofit organization dedicated to fighting Parkinson’s disease (PD) by providing the support, education, research, and community that helps everyone impacted by PD live life to the fullest. Through a nationwide grassroots network of Chapters and Information & Referral (I&R) Centers, APDA works tirelessly to raise public awareness of this chronic neurologic movement disorder and deliver outstanding patient services, resources, and educational and wellness programs to the one million people living with PD in the United States and their care partners and families. Envisioning a world without PD, APDA’s national research program and Centers for Advanced Research aim to provide better treatments and unlock the mysteries of the disease. APDA is also committed to advancing public policy solutions that improve lives and move us toward a cure. Founded in 1961, APDA has raised and invested more than $313 million in its efforts to support the PD community. Learn more at www.apdaparkinson.org. For more information: Eloise Caggiano at ecaggiano@apdaparkinson.org
Rebecca Gilbert, MD, PhD, is the Chief Medical Officer at the American Parkinson Disease Association (APDA). APDA is a Double Platinum Champion Partner of the World Parkinson Coalition and a longtime supporter of the World Parkinson Congresses since 2006. Dr. Gilbert is part of the WPC 2026 Program Committee and helped to design the scientific program.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®