Inside APDA: Chapters, Centers, and Groundbreaking Research
The American Parkinson Disease Association (APDA) is a nationwide network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to provide the support, education, and research that will help everyone impacted by PD live life to the fullest. APDA Chapters and Information & Referral Centers offer a wide range of programs, resources, education, and support, while our Centers for Advanced Research, along with a variety of funded grants and fellowships, are the backbone of our research program. At the Centers, some of the most compelling PD research is underway – research that keeps us optimistic and gives us hope for the future.
We’re proud of the inspiring work and intense dedication coming out of our Centers for Advanced Research and we’re excited to give you an inside look today!
What is an APDA Center for Advanced Research?
APDA Centers for Advanced Research support large PD research programs at major academic centers around the country. These programs are composed of research trainees, fellowship programs, early-stage discovery programs, and later stage clinical translation. The Centers facilitate research at the forefront of investigations into the causes, treatments, and potential cure(s) for PD. In addition to the studies and clinical trials that APDA’s funding supports, it also enables approximately 38,500 PD patient visits each year across all Centers.
APDA’s nine Centers for Advanced Research are located at:
- Boston University School of Medicine
- Brigham and Women’s Hospital, Harvard Medical School
- Emory University School of Medicine
- Mayo Clinic, Jacksonville
- Rutgers Robert Wood Johnson Medical School
- University of Alabama at Birmingham, School of Medicine
- University of Pittsburgh Medical Center
- Washington University School of Medicine
- Yale School of Medicine
Each Center has a Medical Director – an impressive list of experts at the forefront of their field. To give you an insider’s view of the APDA Centers for Advanced Research, we spoke to several of them about their important work:
- Dennis W. Dickson, MD & Pam J. McLean, PhD | Medical Directors, APDA Center for Advanced Research at Mayo Clinic, Jacksonville
- M. Maral Mouradian, MD | Medical Director, APDA Center for Advanced Research at Rutgers Robert Wood Johnson Medical School
- Joel S. Perlmutter, MD | Medical Director, APDA Center for Advanced Research at Washington University School of Medicine
- Marie-Hélène Saint-Hilaire, MD, FRCP(C), FAAN | Medical Director, APDA Center for Advanced Research at Boston University School of Medicine
Insights from conversations with the Medical Directors
What is the primary research focus (or focuses) of the APDA Center for Advanced Research at your institution?
Dr. Dickson & Dr. McLean: Our primary focuses are Parkinson’s disease and Lewy body dementia – specifically, mechanisms of disease, genetics, mitochondrial dysfunction, and neuropathology.
Dr. Mouradian: Our research focus is to understand the molecular and cellular underpinnings of Parkinson’s disease, how the disease starts and progresses, and what factors contribute to or exacerbate this process, all with the goal of identifying steps in this cascade of events that we can block with therapeutic agents to slow down or stop disease progression.
Dr. Perlmutter: Our major efforts have been directed at discovering and validating biomarkers for Parkinson’s disease progression, with a focus on the non-motor aspects. This includes longitudinal neuroimaging (PET and advanced MRI methods); genetics; biochemical measures in cerebrospinal fluid and brain tissues; and dense motor, cognitive, and neuropsychology testing.
Dr. Saint-Hilaire: Currently we take part in several studies addressing the need for improved biomarkers in Parkinson’s disease. We also have a long history of studying how individuals can actively take part in studies designed to better manage their own health and wellness – collaborating closely with rehabilitation specialists in the fields of physical therapy, occupational therapy, and social work.
How does the Center approach the training and development of the next generation of PD researchers?
Dr. Dickson & Dr. McLean: At Mayo Clinic Florida, we are committed to training all levels of PD research scientists and physicians. We train postdoctoral fellows, residents, graduate students, undergraduate students, and even high school students!
Dr. Mouradian: We hope to inspire the next generation of PD researchers to conduct translational research – taking their ideas and results from the laboratory to the clinic and developing treatments that better the lives of people with PD. We give opportunities to preclinical trainees to spend time with a movement disorders neurologist in our Parkinson’s clinic so they can meet people with PD. They also have opportunities to learn about clinical trials and the steps needed to develop lab-identified drugs into prescribed medications.
Dr. Perlmutter: We currently have three fellows and continue to mentor and train junior faculty with frequent one-on-one meetings, group presentations, and weekly group meetings. We tailor the training of our fellows to their individual interests and needs.
Dr. Saint-Hilaire: We have some unique programs at Boston University Medical Center that provide opportunities for medical students to take part in research, such as “Parkinson’s Partners” – a program designed to pair medical students with people with PD. They not only learn how individuals manage a chronic health condition, but are also exposed to research, such as assessing quality of life.
What developments are you most excited about regarding new treatments or therapies for people with PD?
Dr. Dickson & Dr. McLean: Significant research advances are resulting in clinical trials for promising disease modifying therapies – including antisense oligonucleotides – gene therapies, and stem cell therapies. The possibility of not just treating symptoms but modifying the disease course with a novel treatment is particularly exciting.
Dr. Mouradian: Many exciting things are happening in the effort to develop new disease modifying treatments for Parkinson’s disease. Our major focus is on alpha-synuclein, a protein that misfolds and accumulates in the brain in PD and related disorders. We have identified factors that promote this abnormal misfolding, as well as agents that can prevent or slow down this process. These agents are currently being tested in the laboratory.
Dr. Perlmutter: We used to think that abnormal alpha-synuclein in the cortex (the thinking area of the brain) was responsible for dementia in Parkinson’s disease. We just showed, however, that abnormal alpha-synuclein in the cortex is neither necessary nor sufficient for dementia with PD! This finding, coupled with studies that implicate neurotransmitters such as norepinephrine, serotonin, and acetylcholine in the cognitive processes of PD, paves the way for new targets for treatment.
Dr. Saint-Hilaire: I am excited about the new delivery systems of carbidopa/levodopa that are designed to decrease motor fluctuations; studies on the role of exercise to slow down disease progression; and the progress that has been made in deep brain stimulation (DBS).
What is one piece of advice you would give to someone who has been recently diagnosed with PD?
Dr. Dickson & Dr. McLean: Seek out support groups, such as those affiliated with APDA, and engage in exercise. Exercise has been demonstrated to be extremely beneficial for people with PD and is available to everyone in one form or another.
Dr. Mouradian: Stay physically and mentally active, take medications as prescribed on time, and stay informed about the disease and new developments. I also advise those newly diagnosed to remain optimistic and engage with the Parkinson’s disease community and support groups.
Dr. Perlmutter: Find a good PD specialist, exercise your body and mind, learn about your condition, and, if inclined, participate in research studies so that we can improve treatments down the road.
Dr. Saint-Hilaire: Consider taking part in research. There are many observational studies, genetic studies, and interventional studies that will improve our understanding of PD. Also, see a physical therapist and start to be more physically active.
If you weren’t working in the world of PD research, what would you be doing instead?
Dr. Dickson: If I wasn’t involved in Parkinson’s disease research, I would be engaged in diagnostic neuropathology in a hospital or clinic.
Dr. McLean: I would be researching other neurological disorders, like Alzheimer’s disease or multiple sclerosis. Many of the neurodegenerative diseases that involve protein aggregation in the brain have, or will likely have, common disease mechanisms. Therefore, research on other neurological diseases will ultimately inform the field of PD research.
Dr. Mouradian: Advocating for the PD community to support people with the disease and their care partners, as well as increasing research funding.
Dr. Perlmutter: I would be retired: hiking, rock collecting, traveling, studying, reading books and learning another language.
Dr. Saint-Hilaire: I love my work. I have been privileged to provide care to extraordinary people and their care partners for over forty years. Thanks to research and support from APDA, I think we have more tools to improve quality of life, but I also know there is much work to be done. However, if I had not been able to pursue medicine, I would have been an art historian.
We are grateful to these Medical Directors for taking the time to share their thoughts and insights with us and we hope you enjoyed learning more about their important work.
Tips & Takeaways
- APDA’s national research program, which has funded more than $62 million in research to date, includes a variety of individual research grants and fellowships that are awarded annually, as well as the maintenance of nine APDA Centers for Advanced Research.
- APDA Centers for Advanced Research support large PD research programs at major academic centers around the country and facilitate research at the forefront of investigations into the causes, treatments, and potential cure(s) for PD.
- The Centers are part of APDA’s nationwide network which includes APDA Chapters and APDA Information & Referral Centers, each of which offers a range of PD programs, resources, education, and support. Visit the Community page of our website to see if there is a Chapter or Center near you, email apda@apdaparkinson.org, or call us at 800-223-2732. (Or visit our Virtual Events Calendar no matter where you live!)
- One of the top tips from APDA Center for Advanced Research Directors for those recently diagnosed is to exercise! You can get started here.
- You can support APDA’s mission, including our national research program, by making a donation here. Thank you.