Episode 119: Meet the Researcher - Learning About Dystonia
In this podcast episode, we ‘Meet the Researcher’, featuring a prominent investigator who has received support from the Parkinson's Foundation. We illustrate how a research career develops, what motivates people to study what they do, and to give some insight into what support from the Parkinson’s Foundation can accomplish in understanding the disease better and finding solutions.
In this episode, Dr. William Dauer, Director of the Brain Institute at the University of Texas Southwestern Medical Center in Dallas, describes his career path and how he came to be interested in movement disorders and in dystonia in particular, a condition in which muscles contract involuntarily, causing repetitive or twisting movements. He has long been involved in basic science research as well as in clinical practice, and what he has found in each area he has been able to apply to the other.
Released: December 28, 2021
William (Bill) is Professor of Neurology & Neuroscience and the inaugural Director of the Peter O’Donnell Jr. Brain Institute at the University of Texas Southwestern Medical Center in Dallas, Texas. His academic career includes a medical degree from Washington University School of Medicine in St. Louis followed by internship and fellowships at Beth Israel Hospital in Boston and Columbia University in New York. He is a leader in the study of Parkinson’s disease and dystonia. For almost two decades, the team he leads has performed groundbreaking research focused on the molecular basis of dystonia and the mechanisms of neurodegeneration in Parkinson’s disease. Bill is an elected member of the American Society for Clinical Investigation, and his work has been recognized with the Dystonia Medical Research Foundation’s Fahn Award, the Michael J. Fox Foundation Bachmann-Strauss Prize for Excellence in Dystonia Research, and the Harold and Golden Lamport Award for excellence in clinical science research from Columbia University.
Episode 11: Extending the Reach of Parkinson’s Resources and Services
Unfortunately, many communities do not have access to the most up-to-date information and high-quality resources on Parkinson’s disease, even in the biggest cities. Every community has its own culture and flavor, and community outreach programs must recognize these differences to be successful. To design appropriate programs, it is also crucial to have a trusted contact and champion within the community. Aaron Daley of the University of California, San Francisco, describes his center’s outreach efforts and what is needed to bring Parkinson’s resources to underserved and underrepresented communities.
As you know, and like Parkinson’s itself, education and services for people with PD are not one-size-fits-all. Hopefully, you have access to resources in your community similar to what Aaron describes in this episode. If you don’t know where to find them, call our toll-free Helpline at 1-800-4PD-INFO (473-4636). Our PD Information Specialists can help you locate health care providers, wellness classes, and more
Aaron Daley, MA, is the clinic and research coordinator for the University of California, San Francisco (SF) Parkinson's Disease (PD) center. He runs the day-to-day operations of the center, including clinical research trials, PD outreach and education in the Bay Area, and follow-up clinical care in the UCSF Movement Disorder department. Given his location in the SF Bay Area—one of most diverse populations in the world — he strives to collect, create, and transmit culturally appropriate information on PD. In the last 10 years, he has worked on a variety of National Institutes of Health- and Department of Defense-funded research projects: investigating issues related to mental health screening of Iraq and Afghanistan veterans, blood ratios in massively transfused trauma patients, and the effects of cognitive behavioral interventions with sleep disorders and depression. He is interested in the ways that medicine and mental health intersect, as well as investigating ways that our society can improve the services and quality of life of the mentally ill. He graduated with a degree in psychology from the University of San Francisco in 1999, and a Master’s degree in Psychology, with an emphasis in research, from San Francisco State University in 2008.
Episode 26: Medical Marijuana: Going Green for PD?
More and more people are exploring medical marijuana, also called cannabis, as a treatment option for various chronic health conditions, including Parkinson’s disease. Several states have legalized medical cannabis, but because federal drug laws have prevented scientific investigations on cannabis and its components for many years, much is still unknown about its use for medical purposes. Patients have questions about it, and physicians are still feeling their way through the landscape of medicinal cannabis use. Dr. Danny Bega of Northwestern University’s Parkinson’s Disease and Movement Disorders Center in Chicago, a Parkinson’s Foundation Center of Excellence, sheds light on some of the issues and concerns surrounding the use of medicinal cannabis.
Released: April 10, 2018
Dr. Bega is a fellowship trained, board-certified, movement disorders neurologist at the Northwestern University Feinberg School of Medicine. He has completed clinical training in neurology at Harvard’s Massachusetts General Hospital and Brigham & Women’s Hospital. Dr. Bega has expertise in the care and management of patients with a variety of movement disorders including Parkinson’s disease, and is the director of the Northwestern Huntington’s disease and Wilson’s disease clinics. He has completed master’s level training in clinical investigations through the Northwestern Graduate School and is involved in several industry sponsored trials. His primary area of interest is the study of alternative and non-pharmacologic interventions in movement disorders and their impact on quality of life.
Episode 115: Repurposing Medications to Slow Progression of PD
Until the ultimate goal of finding a cure for Parkinson’s disease (PD) is achieved, researchers are taking various approaches to developing a treatment that significantly slows its progression. Here, clinical science and basic science come together to understand the underlying biological mechanisms of PD and then using that knowledge to test medications that target those mechanisms. Having discovered such molecular and cellular malfunctions, scientists may tailor the development of medications to target the underlying causes of the disease.
Another approach has also relied on knowing the mechanisms of the disease but then searching through the vast array of current drugs to treat all sorts of conditions and rationally choosing ones that may work to slow progression of PD – so-called drug repurposing. Dr. Patrik Brundin, Director of the Parkinson’s Disease Center at Van Andel Institute in Grand Rapids, Michigan, explains that this is the approach that the International Linked Clinical Trials (iLCT) program for Parkinson’s has taken. Since its inception in 2010, the iLCT has become one of the most comprehensive drug repurposing programs focused on a single disease. Under this program, seven clinical trials have been completed, and 15 are ongoing, testing 16 potential candidate drugs to slow the progression of PD. The advantage is that the drugs under consideration have already been tested for safety and how they act in the body, speeding up the process of applying them to Parkinson’s.
Released: October 19, 2021
Deputy Chief Scientific Officer, Van Andel Institute, Director, Center for Parkinson’s Disease, Grand Rapids, MI, USA
Patrik Brundin earned his PhD in 1988 and MD in 1992, both from Lund University, Sweden, and joined the Van Andel Institute in 2012. He is highly cited in neuroscience with more than 400 publications on Parkinson’s disease and related topics. His research focuses on pathogenic mechanisms of Parkinson’s and development of therapies that slow or stop disease progression or that repair damaged brain circuits. He is a member of the World Parkinson Coalition Board of Directors and The Michael J Fox Foundation for Parkinson’s Research Executive Scientific Advisory Board. He also serves as co-editor-in-chief of the Journal of Parkinson’s Disease and chair of the Linked Clinical Trials scientific committee.
Episode 114: Gene-Based Therapies for Parkinson’s Disease
Gene-based therapies for Parkinson’s disease, while still in the developmental stage, are under active investigation. For this potential therapy, genes are engineered in a laboratory and then injected into specific parts of the brain. The genes may function either to induce cells in the brain to produce dopamine, or to code for the production of enzymes that then lead to the production of dopamine.
This episode is the second part of our conversation with Dr. Roger Barker, Professor of Clinical Neuroscience at the University of Cambridge in the United Kingdom. In our previous podcast with him, he discussed cell therapy for Parkinson’s. Here, he explains what gene-based therapy is, plans for the execution of the treatments, what symptoms they are aimed at, where the field currently stands, and how it compares to developments in cell-based therapies. As the field is still in the experimental stages, he again offers advice to people with Parkinson’s who are considering entering a clinical trial of gene-based or cell-based therapy and what they may expect in terms of symptom management and disease progression.
Released: October 5, 2021
Roger Barker, BA, MBBS, MRCP, PhD is the Professor of Clinical Neuroscience at the University of Cambridge and Consultant Neurologist at the Addenbrooke’s Hospital Cambridge. He is a PI in the MRC-Wellcome Stem Cell Institute in Cambridge and Director of the MRC funded UKRMP Stem and Engineered cell hub.
His research seeks to better define the clinical heterogeneity of two common neurodegenerative disorders of the CNS- namely Parkinson’s (PD) and Huntington’s disease (HD). This has helped him define the best way by which to take new therapies into the clinic including novel experimental therapeutics such as cell and gene therapies.
Episode 90: Movement Strategies: Mobility, Falls & Freezing of Gait
Movement issues are central to Parkinson’s disease (PD), even in the early stages before complications may become obvious. From the time of diagnosis and throughout the course of the disease, movement and staying physically active are essential. Both regular exercise and physical therapy can help people with PD keep moving well and for as long as possible. The Parkinson’s Outcomes Project, the largest clinical study of PD, conducted across the Parkinson’s Foundation’s Centers of Excellence network, showed that physical activity of at least 2.5 hours a week can slow decline in quality of life. Plus, some studies suggest that physical therapy, including gait, balance, resistance training, and regular exercise of sufficient duration may slow the progression of the disease.
Physical therapists with a neurological specialization are an important part of the PD health care team and should be consulted early, both for an initial evaluation as well as to address any movement problems and encourage exercise as a part of treatment to minimize problems later. Heather Cianci is Outpatient Neurological Team leader at the Dan Aaron Parkinson’s Rehabilitation Center, part of the University of Pennsylvania Health System in Philadelphia, a Parkinson’s Foundation Center of Excellence. She says an early consultation can take advantage of a particularly valuable window of opportunity to address movement issues, and improving movement and physical impairments can improve one’s mental state as well.
Heather Cianci, PT, MS, GCS is the Outpatient Neurological Team Leader and founding therapist of the Dan Aaron Parkinson’s Rehabilitation Center, Penn Therapy & Fitness at Pennsylvania Hospital in Philadelphia, PA – part of the University of Pennsylvania. Heather received her Bachelor’s in Physical Therapy from the University of Scranton in Scranton, PA and her Master’s in Gerontology from Saint Joseph’s University in Philadelphia. She has been a physical therapist since 1994 and received her board certification in geriatrics in 1999 from the American Board of Physical Therapy Specialties. Heather is an LSVT® BIG certified clinician, a PWR! certified clinician, a graduate of the Rock Steady Boxing program for Parkinson’s and is certified in Music and Memory®. She serves as an LSVT® BIG Faculty Instructor for LSVT Global, Inc., and Co-coordinator and PT Faculty for the Parkinson’s Foundation’s (PF) Allied Team Training Program. Heather has authored book chapters on rehabilitative strategies for PD, and Frontotemporal Degeneration. She also is the author of the PF educational manual “Fitness Counts.” Heather has lectured for various state Physical Therapy Associations, the former Parkinson Disease Foundation, the Michael J. Fox Foundation, national continuing education companies, and Philadelphia-area conferences and support groups. Her research includes movement strategies for bed mobility, falls, freezing of gait, and functional movement disorders. She teaches about rehabilitation and PD at Thomas Jefferson University’s (Philadelphia, PA) and Neumann University’s (Aston, PA) departments of PT. Heather is a former Board member of CurePSP® and team member of the COPE program (Comprehensive Outpatient Atypical Parkinsonism Evaluation) at Pennsylvania Hospital’s Parkinson’s Disease & Movement Disorder Center.
Episode 89: Retention Rates in Longer Clinical Studies
Clinical studies, studies that involve people, first use healthy people to test a drug’s safety and then use people with a disease or condition to prove that the drug works as intended. They are essential for bringing any new therapy to the public. Getting U.S. Food and Drug Administration approval for devices require rigorous studies, as well. Recruiting enough people to participate is often a long process, and for trials that may go on for a year or more, retaining people in the studies is often a challenge. People may get bored, find multiple study visits burdensome, have an adverse reaction to a drug being tested, move away, or drop out for a multitude of other reasons. If too many people discontinue the study, it will not have enough statistical ”power” to give a meaningful answer when the data are analyzed.
Christine Hunter, BSN, RN, Research Director of the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, a Parkinson’s Foundation Center of Excellence, describes how her center finds people with Parkinson’s disease who may want to participate in trials, what factors drive retention in trials, and ways to facilitate retention.
Released: September 8, 2020
Christine Hunter, RN, BSN is a registered nurse and has worked in ICU and CCU, charge nurse on the step-down cardiac unit, and in Quality Management for the Memorial Hospital System. She joined Baylor College of Medicine Parkinson Disease Center and Movement Disorders Clinic (PDCMDC) in 1996. She has been an active member of the Parkinson Study Group (PSG) as well as Huntington Study Group (HSG) during this time and has served in several different capacities within these groups, such as the Coordinator representative on the Executive committee, serves on the steering committee for an HD trial, served on the credentialing committee, and budget committee. She has extensive experience in Clinical Trials for all Movement Disorders. She has been the Parkinson Foundation Center Coordinator at Baylor College of Medicine since 1996 and an active member of the Task Force for the PF Mentoring and Networking Program.
When people take a prescribed drug, they rarely if ever consider how it came to be. They assume it is the right drug and will work safely as it is supposed to. But leading up to that drug being available is a long process of discovery or invention of the molecule based on knowledge of the biology it is supposed to affect, then testing in the laboratory and in animals, and several phases of testing in people to make sure that it is safe and effective. Each of these steps takes time and lots of financial investment. Even after a drug is approved by the U.S. Food and Drug Administration for sale and then put on the market, further study of the drug in a larger population than in the testing phases may be carried out. In this episode, Dr. Hubert Fernandez, Director of the Center for Neurological Restoration at the Cleveland Clinic in Ohio, a Parkinson’s Foundation Center of Excellence, describes the process of bringing a drug to market, including how many of them never make it. And he explains why people need to participate in the clinical trials and what they can expect when they do.
Released: August 25, 2020
Hubert H. Fernandez, MD, is Professor of Medicine (Neurology) at the Cleveland Clinic Lerner College of Medicine, Case Western Reserve University and the Head of Movement Disorders under the Center for Neurological Restoration at Cleveland Clinic in Cleveland, Ohio.
Dr Fernandez received both his BS in Biology and MD degree in the Philippines. He completed his internship in internal medicine at University of Pennsylvania/Pennsylvania Hospital in Philadelphia, Pennsylvania; his residency in neurology at Boston University Medical Center in Massachusetts; and his fellowship in movement disorders at Brown University in Rhode Island.
Dr. Fernandez is an internationally recognized expert in movement disorders who has been voted one of the Best Doctors in America by his peers. After completing his medical training, he joined the faculty of Brown University School of Medicine as Assistant Professor of the Department of Clinical Neurosciences and served as Associate Director of the Movement Disorders Unit and Neurological Director of its Functional Neurosurgical Program. In 2003, Dr Fernandez relocated to the University of Florida, where he eventually became Director of the Clinical Research Unit for Neurological and Psychiatric Disorders, Vice Chair of Academic Affairs, and Professor of Neurology prior to joining Cleveland Clinic. An active and productive researcher, he has initiated or participated in over 50 clinical trials and has published his findings in well over 300 articles and abstracts on Parkinson’s disease, cervical dystonia, blepharospasm, and other movement disorders. He has nearly 40 published book chapters and books to his credit, and has served on the editorial board of Movement Disorders and is currently an editorial board member of the American Journal of Clinical Neurology, European Neurological Journal, and Clinical Neuropharmacology.
Dr Fernandez is a fellow of the American Academy of Neurology, and a member of the American Neurological Association. He is currently elected as a Councilor for the AAN Movement Disorders Section, Executive Committee Member of the Parkinson Study Group and Dystonia Study Group; and is also an Executive Board Member of the World Neurology Foundation. He has served as President of the Florida Society of Neurology, and is the current Co-Medical Editor of the Movement Disorders Society Web site. Recently, he has been elected the Co-Chair of the Parkinson Study Group for a 6 year term.
Episode 86: Personalized Medicine: The Voice of the Patient
Personalized medicine has garnered a lot of attention over the past decade. Usually it means determining the factors for each person that affect their health, their diseases, and potentially their treatments. Some examples are biomarkers that are found in their blood, their genetic make-up, diet and nutrition, behaviors, and environment. One example is the Parkinson’s Foundation’s PD GENEration initiative that offers free genetic testing and counseling for people with Parkinson’s disease (PD) to determine what genes and gene variants affect the course of their disease and response to treatments.
But despite all the scientific advances that allow these forms of personalized medicine, one crucial aspect of personalized medicine is the voice of the patient, both in each person’s encounters with the medical system and treatment team, as well as to inform the kinds of research that should be done and how to design and perform them. Dr. Bas Bloem, a professor of movement disorder neurology at Radboud University Medical Center in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, discusses how people with PD want to be heard and how a new definition of health may best put people’s disease into the overall context of their lives.
Released: July 28, 2020
Professor Bas Bloem is a consultant neurologist at the Department of Neurology, Radboud University Medical Centre, Nijmegen, The Netherlands. He received his medical degree, with honours, at Leiden University Medical Centre in 1993 and obtained his PhD degree in 1994. He trained as a neurologist between 1994 and 2000, also at Leiden University Medical Centre. He received additional training as a movement disorders specialist during fellowships at The Parkinson's Institute, Sunnyvale, California, and at the Institute of Neurology, Queen Square, London. In September 2008, he was appointed professor of neurology, with movement disorders as special area of interest.
Professor Bloem is on the editorial board for several national and international journals and has published over 750 publications, including more than 640 peer-reviewed international papers. This includes a series of large clinical trials, all of which were published in high-end scientific journals. He has also supervised 48 successfully completed PhD dissertations. His H-index is 74 (Publons) / 86 (Research Gate) / 97 (Google Scholar).
Professor Bloem is past president of the International Society for Gait and Postural Research. He recently became an Officer (secretary-elect) for the International Parkinson and Movement Disorder Society. From 2009 until September 2017, he was part of the board of ZonMw (The Netherlands Organisation for Health Research and Development). In 2011, he was elected the National Healthcare Hero by the Dutch Ministry of Health and Citizen of the Year for the city of Nijmegen in 2012. Since 2017, he has served on the Executive Scientific Advisory Board of The Michael J Fox Foundation for Parkinson’s Research. In 2018, he was elected as member of the “Koninklijke Hollandsche Maatschappij der Wetenschappen” (the Royal Holland Society of Sciences and Humanities), the oldest scientific society in the Netherlands. In 2018, he won the Tom Isaacs award as a recognition of his longstanding achievements in the field of Parkinson’s disease.
Also in 2018, he was elected as member of the Academia Europaea. In 2019, he was elected as Fellow of the Royal College of Physicians of Edinburgh. In 2020, he was elected as member of the Royal Netherlands Academy of Arts and Sciences. Also in 2020, he became co-Editor in Chief of the Journal of Parkinson’s Disease.
In 2002, Professor Bloem founded and became director of the Radboudumc Centre of Expertise for Parkinson & Movement Disorders, which was recognised from 2005 onwards as a centre of excellence for Parkinson’s disease. Together with Dr Marten Munneke, he also developed ParkinsonNet, an innovative healthcare concept that now consists of 70 professional networks for Parkinson’s disease patients, covering all of The Netherlands (www.parkinsonnet.nl).
Because of the evidence-based quality improvement and significant cost reduction, ParkinsonNet has received multiple awards, including the Best Pearl for Healthcare Innovation prize in 2011. In 2015, ParkinsonNet was awarded with the Value-Based Health Care Prize.
Professor Bloem has two main research interests: cerebral compensatory mechanisms, especially in the field of gait and balance; and healthcare innovation, aiming to develop and scientifically evaluate patient-centred collaborative care. He also values the publication of remarkable observations in single patients.
Neuro Talk: Propelling a Future of New Parkinson’s Drugs Through Research
We know that research is an essential part of finding a cure for Parkinson’s disease (PD), but how can we speed up the process? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, discusses the Venture Philanthropy Fund — our newest research-driven investment fund. Dr. Beck explains why Parkinson’s research is underfunded and shares how the Venture Philanthropy Fund is working to accelerate the breakthroughs in treatments that people with PD need today.
