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.

Dan Keller (00:08)
Welcome to this episode of Substantial Matters: Life and Science of Parkinson’s. I’m your host, Dan Keller. At the Parkinson’s Foundation, we want all people with Parkinson’s and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Only about 40% of people with Parkinson’s in the US see a neurologist for their care, and even fewer see a specially trained movement disorder specialist. This leaves many individuals and whole communities lacking crucial Parkinson’s information and resources, but like the disease itself, education and services for Parkinson’s are not one size fits all. As I’m sure you know, outreach must be tailored to different communities and come from a trusted source to be effective. I spoke with Aaron Daly, manager and research coordinator at the University of California San Francisco Parkinson’s Disease Clinic and Research Center about his community education and outreach initiatives. His experience and tips are helpful for anyone interested in becoming more active in the local Parkinson’s community, whether you are a person affected by Parkinson’s, a healthcare provider, a community leader, or a compassionate citizen, or all of the above. One note before we dive into the conversation, at the beginning of our chat, Aaron mentions Moving Day, a walk for Parkinson’s. This event takes place in more than 30 cities across the country. Funds raised through Moving Day support the Parkinson’s Foundation’s mission by helping to deliver expert care through our Centers of Excellence network, funding cutting-edge research and providing free resources for people with Parkinson’s and their families.

Aaron Daley (02:17)
What we were hoping to do was some additional outreach and education into populations that may not have been accessed previously or that there was a need for. So we applied for an NPF grant based on the funds that were raised by Moving Day. They make a big point of saying that some of the money that is raised stays in the community to fund these kinds of things, and we thought this is a great opportunity for us. Our focus was into the Asian communities in San Francisco. About 25 to 30% of the population in San Francisco is of some sort of Asian background, and obviously there’s a very large Chinese population in San Francisco as well. Our focus was into Chinese, Japanese and Filipino populations. We applied for the grant. We had three goals. They were to increase outreach and education with the general public, to do some additional trainings with the health professionals, the people that are sort of the first line seeing patients in these communities, and also translate additional materials that we had so that they could be more excessive.

Dan Keller (03:26)
When you approach those different communities, did you have to do it in different ways, or did you have to get into them through people who are of those ethnicities?

Aaron Daley (03:36)
Luckily, we had had good contacts with the Chinese and Japanese communities through some work that we had done in the past, and those relationships actually had been developed by the center coordinators that had come before me, and that really, more than anything, helped us to have a lot of success with those communities. All we had to do was contact the person that we had worked with in the past, say we have this great opportunity to increase the outreach and education that we’ve been doing. Are you interested? And they, of course, were very excited as well. And it was a really easy process for that, because then it just was, hey, let’s sit down and make a game plan. What do we think is possible? What do you need from us? What would you like to have from us? And the conversation was just instantly moved forward into action.

Dan Keller (04:32)
What were the access points into the communities?

Aaron Daley (04:35)
For the Chinese community, there is a large organization called Self Help for the Elderly. They provide health services for something like 50 to 60,000 people. They encompass much more than just medical health. They also do, you know, social work. They have a long term living facility that they manage. They do daytime facilities for seniors, as well as just the general health. Health and wellness initiatives, better nutrition, all those kinds of things. And we were lucky enough that our contact point with them was the CEO of that organization. So when you start off with the CEO, you know things are going to go well. And then in the Japanese community, we worked with Kimochi and that as well, we’d had a good relationship in the past. And as well, our contact point was the CEO, and it really just made everything so much more smooth to be able to instantly have not only the person in charge, but a way of saying, so, who should I talk to about this particular component? And they could bring that person in immediately, and there was no waiting around and start working.

Dan Keller (05:44)
Were these communities underserved? Do they have demonstrably better outcomes now than otherwise?

Aaron Daley (05:52)
I think that they are underserved. I think part of the issue is that certainly in the Chinese community, it’s very insular. They do everything in their daily lives within Chinatown, that’s where they do their grocery shopping, that’s where they see their doctors, every component of their life. And for us, you know, when we do outreach and education, you know, most of what we do is inviting people to come to programs or sending out something that says we’re going to be doing a Parkinson’s 101 overview, that sort of thing. But it’s rare, I think, that we really would be able to access those communities, mostly because there might be a language barrier, but I think also just because, in our general work in the community, I think that we didn’t have the things in place to really get in and to make sure that these communities were being accessed, so to have a specific goal in mind, to make sure that that information was going to get there.

Dan Keller (06:53)
Was it all a bed of roses? I mean, did you find any problems?

Aaron Daley (06:57)
Yes, you know, the main problem really was that when we didn’t have a strong community contact at the beginning, it was very hard to get things going. It was interesting as well that we also had an organization that wanted the materials that we had created, but wasn’t really interested in doing much beyond sort of accepting the additional modules that we might have had translated. We have a movie as well that we had put Chinese subtitles into. But beyond that, they just weren’t really interested in doing much else with us. And I think a lot of that had to do with the specific population that that particular agency worked with. They saw that the reality of situation was that the people they worked with weren’t going to get much from a real, directed outreach education program. They wanted to have the materials available, but that was about the most that they thought they could do with their community.

Dan Keller (07:53)
Do each of these communities want to see physicians of their own community? Or will they go to UCSF, where I’m sure some of the physicians are?

Aaron Daley (08:02)
I think that there is a pretty strong pull to stay within their community. Dr Christine did a presentation at NEMS, which is the Northeast medical systems, and spoke specifically to all of these primary care providers who are seeing these patients, and it’s in Chinatown, and that seemed like a really good way for us to make sure that the people we know that are seeing this population, and sort of at first, that we at least have aligned both in doing some outreach education, but also that those physicians now know someone at UCSF that if they have follow up questions or additional things that they need to ask that they have sort of a warm body, they know they can contact.

Dan Keller (08:48)
If other people want to emulate this sort of thing that you did, what’s your advice?

Aaron Daley (08:54)
Make sure you’ve got a strong community contact in place before you start planning too much, because you don’t want to waste a lot of time creating something that then you present and it goes nowhere because you didn’t have the guidance of the community agency at the beginning.

Dan Keller (09:12)
I suppose that goes for materials also. What are they going to use? How do they absorb things?

Aaron Daley (09:14)
Yeah, and I think for us getting things translated, we wanted to do that locally as well, rather than sending it out to some large scale medical translations, but make sure that it’s done by someone who we have a really close contact with that can send us proofs of things that we can then give to our community agency contacts to review, because there are always things that they would understand we were trying to get across that weren’t quite getting across in the translation, and it’s really just a tweaking, but having that really personalized contact, as opposed to having to email with some person who is working out of the East Coast somewhere, who has some team that they don’t work with, but that they send documents to, and it comes back to them, it just makes it a lot harder when you have to do revisions, as opposed to somebody that lives in the Bay Area that can get things back to you on a much quicker basis, and is much more responsive when changes need to be made.

Dan Keller (10:13)
Anything important or interesting to add?

Aaron Daley (10:17)
It was a great program. We really enjoyed doing it. I think that it was nice as well to strengthen the contacts that we already had, and we’re excited, I think, to try and do more of it on a regular basis, and also a good learning lesson that we need to start developing those same sort of friendships with other agencies in the Bay Area so that we can access additional groups that might need outreach and education.

Dan Keller (10:41)
Very good. Thanks.

Dan Keller (10:52)
Hopefully you have access to resources in your community, similar to what Aaron describes in our conversation. If you don’t know where to find them, call our toll free helpline at 1-804-PD-INFO. Our PD Information Specialist can help you locate healthcare providers, wellness classes and Moving Day events. You can also start your own support group or programs if you would like to take action to help improve the lives of people affected by Parkinson’s in your area, partner with your local Parkinson’s clinic or Parkinson’s Foundation chapter trust is key when it comes to establishing and maintaining good relationships with your doctors and with the community at large. Once established, these relationships can afford more opportunities for outreach and engagement, ultimately leading to better care and better lives. In our next podcast, we’ll follow up on the theme of outreach, focusing on Hispanic communities, please call our helpline for more ideas and resources to bring better Parkinson’s care to your communities. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback we’ll respond to some questions in future episodes at the Parkinson’s Foundation, our mission is to help every person diagnosed with Parkinson’s live the best possible life. Today. To that end, we’ll be bringing you a new episode in this podcast series twice a month. Till then, for more information

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.

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.

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.

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.

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.

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.

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.

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.