I am currently the Hurtig-Stern Professor of Neurology and Chief of the Movement Disorders division at the University of Pennsylvania Perelman School of Medicine. I divide my time between providing clinical care for patients with Parkinson’s disease and related disorders and participating in cooperative, collaborative research aimed at improving treatment options for patients with Parkinson’s disease.
The Parkinson Study Group has been a second family for me over the past 30 years and relationships with PSG investigators have been largely responsible for where my career has taken me. Because of this long and important connection, I am delighted to be considered along with Joohi Jimenez-Shahed for the positions of chair/co-chair of the PSG. My first contact with the PSG was as an Experimental Therapeutics fellow at the University of Rochester in 1996. The opportunity to work with Roger Kurlan, Ira Shoulson and Karl Kieburtz and be part of the PSG brought me to Rochester for fellowship.
My first job was in the Movement Disorders division at the University of Pennsylvania. My mentors at Penn, Howard Hurtig and Matt Stern, were active PSG member, and my close connection with the PSG continued. Over the years, many of my closest academic colleagues came up as PSG junior investigators, and we can mark career milestones in terms of PSG studies. I have served many roles in the PSG: medical monitor (for TEMPO and LARGO), site investigator, symposium chair, steering committee, DSMB and back to medical monitor (for NILO-PD). Most recently, I have been a member of the Executive Committee and on the steering committee for several PSG trials. I have appreciated the integrity and innovation that the PSG has brought to experimental therapeutics for Parkinson’s disease.
Over my career, I have also worked outside the PSG in capacities that have given me a very particular set of skills. I am fortunate to have been involved on many levels with the Parkinson Progression Marker Initiative (PPMI), which, while not a clinical trial, still serves as a model for modern, collaborative clinical research. Finally, I worked in Industry, at Eli Lilly and Co. for 5 years before coming back to Penn in 2017. This unique tenure allowed me to understand first-hand the goals and perspectives of our Industry partners. Taken together, these experiences give me perspective on how the PSG fits into the Parkinson ecosystem and how it can be an essential part of that ecosystem now and into the future.
After completing a movement disorders fellowship in 2005 at Baylor College of Medicine, I developed clinical research experience across different movement disorders, but have ultimately chosen to focus my interests in deep brain stimulation (DBS). I currently serve as the medical director of Movement Disorders Neuromodulation & Brain Circuit Therapeutics at the Icahn School of Medicine at Mount Sinai, and am interested in deciphering the neurophysiology of movement disorders recorded intraoperatively and from chronically implanted devices. My work also includes optimizing the precision of wearable technologies in measuring Parkinson’s disease (PD) manifestations, and health outcomes research as it pertains to DBS.
I have been a member of the Parkinson Study Group (PSG) since graduating fellowship and served as site PI for many of its studies. I served as co-chair and ultimately chair of the functional neurosurgical working group, during which time I developed and implemented RAD-PD, the Registry for the Advancement of Deep Brain Stimulation in Parkinson’s disease, within the PSG network and funded by the Michael J Fox Foundation. I also supported 3 publications and multiple collaborative projects within this group, grew its membership, and facilitated the formation of a Neuropsychology focus group.
I currently chair the Mentorship Committee and serve on the Executive Board. I also serve as the co-chair of the health care disparities and outcomes working group and previously served on the credentialing committee. It has been my distinct privilege to work within the PSG alongside colleagues in order to support our community’s interests in advancing the understanding and treatment of PD in all its many facets. I highly value the PSG’s role as a network through which I have received invaluable support, found opportunities for meaningful collaborations and built friendships that have informed my professional and personal development in multiple ways.
I bring my skills in leadership, organization and collaboration to the table in my bid for PSG co-chair alongside Andrew Siderowf. As a graduate of the American Academy of Neurology’s Women Leading in Neurology program, I value the fundamentals of authentic leadership. I have exemplified these in my varied leadership roles on the Medical and Science Advisory Boards of the Houston Area Parkinson Society, Davis Phinney Foundation and Tourette Association of America, and on Executive Committee of the International Association of Parkinsonism and Related Disorders, and Council of the Deep Brain Stimulation Society. I have a proven track record of leading and collaborating with fellow clinicians and investigators, as well as working within organizations to define the trajectory and scope of research and clinical priorities. I look forward to the opportunity to apply this experience to leadership of the PSG along with Andrew.
We enthusiastically enter our names onto the election ballot for your consideration, running for Chair/Co-Chair of the PSG! Based on our deep knowledge of what the organization has been over its history and an abiding confidence that it will continue to be an important part of the PD ecosystem, we share a common vision about how to continue to shepherd the PSG through evolving times, serve its members and expand its footprint. We have had the opportunity to serve the PSG in a range of capacities over time including committee chairs, working group chairs spanning biomarkers, outcomes and a range of medical and device assisted therapies and as executive committee members. In these roles, we have seen the PSG in action. It has provided leadership in how to design and conduct clinical trials. It also provides a welcoming yet specific community for clinical trialists in movement disorders, and in this context, fosters collaborations, provides a forum for networking, and mentors junior faculty interested in entering the PD
clinical research space. We see these functions as the core and invaluable mission of the PSG, and a desire to sustain and grow them is at the heart of why we are running for Chair/Co-chair.
We recognize that there are challenges that need to be addressed for the PSG to continue to be successful and relevant. We also understand and appreciate the crucial contributions that have been made by leaders that came before us in addressing these challenges and intend to build and carry on the work that has been done. First, we will continue to demonstrate the value of the PSG to potential collaborators, including providing authoritative guidance in trial design, ensuring effective site management and offering educational programs that address the needs and interests of PSG members. The value of the PSG as a clinical trial partner and network should be clearly evident to potential collaborators from academia and industry. We will work to maintain this visibility, and augment it through approaches such as a heightened social media presence and by actively soliciting awareness and interest amongst device and technology companies. Second, we will collaborate with groups sharing common interests including foundations, professional societies and other collaborative study groups when it is mutually beneficial. Finally, we will explore new internal and external initiatives related to clinical trial conduct and standards that fit with our core values and members’ interest, and which have the potential to positively impact the stability and financial sustainability of the PSG. These activities could include identifying new types of collaborations and developing novel ways to support clinical trials through training and education.
We believe wholeheartedly in the unique and essential role that the PSG maintains in testing new therapies for Parkinson’s disease and related disorders and nurturing the community of clinical researchers dedicated to this endeavor. If elected, our Chair/Co-Chair partnership will effectively harness our complementary clinical and research interests and will consolidate our experience, energy and clear vision in service to this important organization and its members.
Martha Nance is a neurologist and geneticist in Minneapolis, MN. She graduated from Yale University (BS) and Virginia Commonwealth University (MD), and completed her neurology residency and clinical genetics fellowship at the University of Minnesota. She has been the Medical Director of Health Partners Struthers Parkinson’s Center, a Parkinson Foundation Center of Excellence, since 2000.
Struthers is widely known for its truly integrated team and approach to care, echoing Dr. Nance’s belief that one cannot do clinical research without first providing first-rate care to patients and their families. She has spent 70% of her time in clinic for her entire career. Dr. Nance is also a committed mentor/educator, speaking widely at local, regional, and national conferences to patients, trainees, and allied health professionals. She served for 6 years on the NINDS NST-1 (K Awards) Study Section, chairing the committee for 3 years (and back on it again in 2023!).
Dr. Nance has been a longstanding member of the PSG, serving as an investigator on numerous PSG and pharma-sponsored trials over the last 2.3 decades. She served on the PSG Scientific Review Committee from 2009-2012, and currently co-chairs the Genetics and Environment Working Group. She is currently on the Steering Committees of the PDGENERATION trial sponsored by the Parkinson Foundation and the Bial ACTIVATE trial.
While Dr. Nance has also been involved with other movement disorders, serving as medical-research liaison for the National Ataxia Foundation from 1993-2006 and chair of the Scientific Advisory Board of the Spastic Paraplegia Foundation from 2003-2023, she is most known for her work in Huntington’s disease. She is currently on her third stint on the Huntington Study Group Executive Committee, and has been a principal investigator, steering committee member, and DSMB member for numerous HD studies, ranging from observational studies such as PREDICT-HD and Enroll-HD, multiple failed trials of putative disease-modifying small molecules, pivotal trials of the three VMAT inhibitors, to current surgical and infusion trials of ASOs. She won the HSG Lifetime Achievement Award in 2019.
Dr. Nance’s particular interests include genetics of PD, clinically-informed and carefully designed research to improve the lives of people with PD, including nonmotor aspects of the disease, and developing/supporting the next generation of PD researchers.
Gregory Pontone, M.D., M.H.S. is the Division Chief of Aging, Behavioral, and Cognitive Neurology and Co-director of the Fixel Neuropsychiatry Program and Professor in the Department of Neurology at the University of Florida. After completing a medicine internship and residency training in psychiatry at Johns Hopkins, Dr. Pontone completed a two-year fellowship in geriatric psychiatry and movement disorders focusing on Parkinson’s disease through the Clinical Research Program of the Morris K. Udall Parkinson’s Disease Research Center. He also completed a fellowship in Clinical Trial Methods in Neurology sponsored by the National Institute of Neurological Disorders and Stroke. He is board certified by the American Board of Psychiatry and Neurology and has an added certification in the specialty of Geriatric Psychiatry. He is an editorial board member for the American Journal of Geriatric Psychiatry and Parkinsonism & Related Disorders. He has been a member of the Parkinson Study Group (PSG) since 2008. He currently serves on the Scientific Review Committee and as the chair of the Cognitive/Psychiatric Working Group. He has also served on the PSG Mentoring Committee and Professional Standards Committee. His clinical and research interests focus on cognitive and psychiatric symptoms in Parkinson’s disease.
We are very pleased to be nominated to serve as Co-Chairs of the Parkinson Study Group, to follow in the footsteps of Hubert Fernandez and Michael Schwarzschild, who have so ably led the organization over the last decade.
As co-chairs, Drs. Nance and Pontone will bring a new flavor to the PSG, allowing the organization to build on its past strengths while introducing new areas of focus. The mission of the PSG is to bring treatments that make a difference to people with PD and those who care about and for them. To accomplish this, we will continue to engage with partners in government, academia, pharma, bioinformatics, and biotechnology to perform clinical trials of novel compounds and devices. We will also work to develop relationships with new partners over the coming years.
The PSG includes and represents the most experienced and committed PD clinical researchers in the country, and is thus the group most able to conduct clinical trials efficiently, ethically, and accurately. Through our working groups and close interactions with each other, we will continue to use the strength of the consortium to enhance, expand, and refine the novel ideas of our members, to better understand the nuances of Parkinson’s disease, how best to measure and quantify these nuances, and to create new insights about the pathogenesis, evolution, and complexity of the disease. Finally, a third strength of the organization that we will continue to foster is its commitment to mentoring—bringing new investigators and coordinators into the field and helping them gain a foothold in the challenging world of clinical research.
Additional areas of focus that Dr. Pontone and Dr. Nance will work to develop include:
Finally, we recognize that leaders do not have all the answers and do not work in a vacuum, and are pleased to work with a strong Executive Committee, selected from the PSG membership, and an equally strong PSG staff. We will encourage an open dialogue with all of them, and from the membership of the PSG, to make sure that the organization continues to meet your needs, so that we can move forward as quickly as possible with our primary mission as clinical researchers.
Dr. Alberto Espay is Professor and Endowed Chair of the James J. and Joan A. Gardner Center for Parkinson’s Disease at the University of Cincinnati. He has published over 300 peer-reviewed research articles and 10 books, including Common Movement Disorders Pitfalls, which received the Highly Commended BMA Medical Book Award in 2013, and Brain Fables, the Hidden History of Neurodegenerative Diseases and a Blueprint to Conquer Them, coauthored with Parkinson patient and advocate Benjamin Stecher, selected by the Association of American Publishers for the PROSE Award honoring the best scholarly work in Neuroscience published in 2020. He has served as Chair of the Movement Disorders Section of the American Academy of Neurology, Associate Editor of the Movement Disorders journal, and for the PSG he has worn multiple hats beyond site investigator throughout the past 20 years, including member of the Executive Committee and Chair of the Motor Study Group. Among other honors, he has received the Cincinnati Business Courier’s Health Care Hero award, the Spanish Society of Neurology’s Cotzias award, and honorary membership in the Mexican Academy of Neurology. His 2022 TEDx presentation, “Parkinson’s and Alzheimer’s: The Solution in Sight,” was selected from more than 12,000 global entries for two 2023 Telly Awards, which honor excellence in video and television across all screens. He currently serves as President of the Pan-American Section of the International Parkinson and Movement Disorders Society and directs the first biomarker study of aging (CCBPstudy.com), designed to match people with neurodegenerative disorders to available therapies from which they are most biologically suitable to benefit, regardless of clinical diagnoses.
William George Ondo, MD, is the Director of the Movement Disorder Clinic at the Houston Methodist Hospital, and is a Professor of Neurology at Weill Cornell Medical School and Texas A&M. His medical degree was awarded by the Medical College of Virginia (Richmond, Virginia), and he completed an internship at the University of North Carolina Hospital (Chapel Hill, North Carolina), and a neurology residency at Duke University (Durham, North Carolina). In 1995, Dr. Ondo undertook a Movement Disorders fellowship with Dr. Jankovic and joined the Baylor faculty for 19 years, then later was a Professor at the University of Texas Medical Science Center-Houston for 5 years, prior to his current position.
Our vision for the next era of PSG growth is to (1) encourage intellectual partnerships with foundations and pharmaceutical/technology industries to add synergy to the global research agenda on PD; 2) initiate and consolidate fund-raising strategies to bulk the financial muscle PSG needs to extend its role into funding and helping develop original ideas; 3) aggressively leverage PSG resources to increase our input in clinical trial design and implementation, and 4) increase the number and quality of fellowship and research training opportunities for the next generation of clinical researchers through collaborations with MDS and other institutions to harness their existent mentoring and logistical infrastructures. We plan to nurture networks and partnerships in order to shape the global agenda for research in PD and extend the success of the PSG as an incubator and developer of the next generation of treatments for the global community of patients.