MSBase Foundation Directors

Helmut Butzkueven (Managing Director) MBBS, PhD, FRACP

Helmut Butzkueven is an academic neurologist specializing in management of Multiple Sclerosis (MS) and real-world MS outcomes research.

He is Professor and Chair of Multiple Sclerosis and Neuro-immunology at Monash University, Director of MS services at Eastern Health and Head of the MS and Neuro-immunology Service at the Alfred Hospital, all in Melbourne.

He is a current NHMRC Practitioner Fellow, and prior fellowships include an NHRMC Career Development Fellowship and the NHMRC/MS Research Betty Cuthbert Fellowship.

Thomas P Leist, MD, PhD (Chair)

Prof Thomas P Leist MD PhD is Director of the Comprehensive Multiple Sclerosis Center at Jefferson University. He is involved in basic and clinical research into multiple sclerosis and the Neurology of autoimmune disorders and infections of the central nervous system. He has also conducted research on the Neurobiology and pathology of retroviral, herpetic, and bacterial infections and the role of lymphokines at the National Institute of Neurological Diseases and Stroke, the University of Miami, the University of California at Los Angeles, and the University of Zurich. A Prof Leist is the author of many research articles and is board-certified in Neurology

Lily Habib, BBus, MBA

Lily Habib has extensive experience in business planning, sale and acquisitions, portfolio management, sustainability strategy, risk management, business development and change management. Lily has almost two decades of experience in the energy sector. She currently leads Pacific Hydro’s Australian Generation business, with operations in wind and hydro, as the company pursues new opportunities in solar, wind and storage; and has led the addition of 1.5GW large-scale solar development to the company’s current project pipeline. Lily holds an MBA, a Graduate Diploma in Finance and Investment, and a Bachelor of Business (Applied Economics).

 

Paarami Udugama, LLB/BCom, GradDip Corporate Governance

Ms Paarami Udugama is currently a Group Counsel within the Legal Team at AGL Energy Limited. Prior to this role Paarami spent a number of years in private practice working at global professional services firm PricewaterhouseCoopers and at top-tier Australian law firms Herbert Smith Freehills (formerly Freehills) and King and Wood Mallesons (formerly Mallesons Stephen Jaques). Her extensive experience includes advising major ASX listed companies in the areas of corporate and commercial law, corporate governance, competition and consumer law.
Paarami graduated from Monash University with a Bachelor of Commerce and a Bachelor of Laws. She holds a Graduate Diploma in Applied Corporate Governance from the Governance Institute of Australia and is a Member of the Australian Institute of Company Directors.

Orla Gray, MD

Dr Orla Gray graduated in Medicine from Queens University Belfast in 1997. She became a member of the Royal College of Physicians in 2001. She completed her post-graduate neurology training in Northern Ireland. In 2006 she gained an MD for her research on the epidemiology, genetica and quality of life in MS. She perfomed a one year clinical and research fellowship in MS and Neurorehabilitation in the Royal Melbourne Hospital in 2008.

Dr Orla Gray currently works in the Ulster Hospital in Belfast as a Consultant Neurologist with a specialist interest in MS.

Dana Horakova, MD, PhD

Assoc. Prof. Dana Horakova, MD, PhD, completed medical school at Charles University in 1992. Since 1999, she has been working in the MS Centre, 1st Faculty of Medicine, Charles University, Prague. In 2006, she spent 6 months training at the Buffalo Neuroimaging Analysis Center, in Buffalo, USA. In 2010, she received her PhD with a thesis titled “Predictive Markers for Clinical Development in Patients with MS.” Dr. Horakova is a member of the Immunological Committee of Czech Neurological Society. She was Chair of the MSBase Scientific Leadership Group between 2016-2020.

Phil Watson

Phil currently works as the Information Security Officer for a litigation support firm. He is responsible for the firm's ISO 27001 (infosec) implementation.

In a previous role he was an IT consultant in Australia and the US, specialising in enterprise IT sourcing projects. He has worked across a number of industries including pharmaceuticals, mining, manufacturing and policing, He has also been an operational IT manager in Australia, the UK and the US.

Dan Hayward

Dan Hayward is an information technology specialist with more than 20 years’ experience in the transformation, delivery, and management of a wide range of technologies, applications, and cyber security programs.

He is currently the Head of Infrastructure and Support at Australian Gas Infrastructure Group. Previously, he was the Head of IT at Pacific Hydro where he was responsible for developing global IT strategies, roadmaps, architecture, cyber security, and governance and ensuring effective infrastructure and security to maintain 24/7 operations for operational assets.

 

Scientific Leadership Group (SLG)

The MGBase Foundation has delegated responsibility for the oversight of the MGBase Registry research activities to a Scientific Leadership Group (SLG). All members, including the chairperson of the SLG, are chosen among neurologists, scientists and nurses with senior experience in the field of myasthenia gravis. 

According to the MSBase Constitution of 2021 the role of the SLG is as follows:

  • Provide scientific assistance to the Foundation with respect to the Foundation's database and website
  • Make recommendations to the Foundation with respect to financing of projects
  • Act as custodians of the data on the Foundation's database(s)
  • Become a self constituting entity, subject to the project regulations participation agreement and any other requirement of the foundation

The SLG is led by the Co-Chairs, A/Prof Stephen Reddel and Dr. Katherine Buzzard. The SLG Regulations can be accessed here.

MGBase SLG Members

Helmut Butzkueven, MD

Helmut Butzkueven is Professor of Neurology and Chair of Multiple Sclerosis and Neuroimmunology research in the Department of Neuroscience, Central Clinical School, Monash University. He is also appointed as Head of MS and Neuroimmunology at the Alfred Hospital and Director of the MS service at Box Hill Hospital, Melbourne, Australia.

His research and clinical interest involves the use of registry data, clinical MRI data, cognitive testing, genomics and patient self-monitoring devices and applications to evaluate treatment strategies to optimise benefit and safety of MS therapies.

Prof Butzkueven led the MSBase operations and scientific teams in an honorary capacity for nearly a decade before his role as Managing Director was formalised in 2013.

Anneke van der Walt, MD

A/Prof Anneke van der Walt is a Neurologist specializing in the management of Multiple Sclerosis and Neuro-ophthalmology. She is appointed as the Head of MS and Neuro-ophthalmology at Alfred Health, Melbourne, Australia and her research laboratory is based in the Department of Neuroscience, Central Clinical School, Monash University.  

Her research interests include digital biomarkers and applied technology, real-world data, MS cognition and cerebellar function. She has a keen interest in Women’s Health in MS as well as symptom management in people with MS. 

A/Prof van der Walt was appointed as Chief Operating Officer in 2019, to work in partnership with the MD and lead MSBase operations.

Katherine Buzzard, BSc (Hons) MBBS PhD FRACP 

Dr Katherine Buzzard is a Neurologist specializing in the management of Neuroimmunological Diseases. She is the Clinical Lead of the Multiple Sclerosis and Neuroimmunology Service at Eastern Health, Melbourne, Australia and is a consultant Neurologist in the MSNI unit at the Royal Melbourne Hospital. She remains active in the academic research sphere, leading the MS and Neuroimmunology research program at the Eastern Clinical School, Monash University. She has published widely in international journals within the field of MS and Neuroimmunology.

 

Stephen Reddel, MBBS FRACP PhD

Associate Professor Stephen Reddel is a staff specialist neurologist at Concord Repatriation & General Hospital Sydney, and consultant neurologist at the Brain & Mind Centre, University of Sydney. He trained in neurology at Royal Prince Alfred Hospital, Sydney, and at the Radcliffe Infirmary, Oxford, and has a PhD in the immunology of the Anti-Phospholipid Syndrome.

He heads the neuroimmunology clinic at Concord Hospital, which specialises in the safe treatment of neurological conditions requiring immunotherapy, including multiple sclerosis, myasthenia gravis, chronic inflammatory demyelinating polyneuropathy and a host of rarer diseases.

He has a longstanding interest in clinical safety and managing the risks of treatment. He has clinical and research interests in Myasthenia Gravis, Neuroimmunology and MS, and Neurogenetics including the Muscular Dystrophies and Inherited Neuropathies.

WenWen Zhang, MD, PhD, FRACP

Dr Zhang is a Neurologist and Neurophysiologist working at at the Alfred Health and Peninsula Health in Victoria, Australia. She specialises in the management of neuromuscular and neuroinflammatory disorders.

She has research interests in Myasthenia Gravis and is looking forward to collaborating with other members of MGBase.

Henry J. Kaminski, MD

Henry J. Kaminski, MD serves as the Meta A. Neumann Professor and Chair of the Department of Neurology & Rehabilitation Medicien at the George Washington University School of Medicine and Health Sciences. Dr. Kaminski has performed clinical, translational, and basic investigations related to myasthenia gravis for over 25 years.

His investigations led to a means to target complement inhibition to the neuromuscular junction as a treatment for patients with myasthenia gravis (U.S. Patent No. 8,961,981) and is moving the invention forward by establishment of ARC Biotechnology, LLC, which he serves as Chief Executive Officer. He was part of the executive committee of MGTX, the NIH-funded study of thymectomy for treatment of myasthenia gravis, which demonstrated the efficacy of thymectomy for patients with generalized myasthenia gravis. In 2019 Dr. Kaminski established as principal investigator the NIH Rare Disease Clinical Research Network site, MGNet.

Carolina Barnett-Tapia, MD, PhD

Carolina Barnett-Tapia, MD, PhD is associate professor in the Department of Medicine, Division of Neurology and the Institute of Health Policy, Management and Evaluation, University of Toronto. She is a neuromuscular neurologist and clinician scientist at the University Heath Network, Toronto, Canada,

Her main research interest is patient-centered outcomes research, patient preference elicitation and health services research in patients with neuromuscular disorders, especially myasthenia gravis.

Gary Cutter, MS, PhD

Dr. Cutter is Professor Emeritus of Biostatistics at the University of Alabama at Birmingham School of Public Health.  He has directed numerous coordinating centers. He is a member of numerous DSMBs and advisory committees for NIH, Pharmaceutical Companies and foundations.  He served on the International Clinical Trials Committee of the National MS Society and International Federation of MS Societies for over a decade as well as being on the editorial boards of the Multiple Sclerosis Journal, Multiple Sclerosis and Related Disorders, the journal Neurology Clinical Practice as a contributing editor and an Associate Editor of Alzheimer’s Disease Translational Research. 

He is a member of the Statistics Editorial Board for the Journal of the American Society of Nephrology (JASN). He is a past President of the Consortium of MS Centers. Dr. Cutter has a major interest in design, analysis and interpretation of clinical trials, epidemiologic studies and evaluation research. He has directed numerous coordinating centers of multiple NIH randomized trials. He was the PI of the completed Trial of Thymectomy plus Prednisone versus Prednisone alone in the treatment of non-thymomatous Myasthenia Gravis (MGTx). He was the founding Director of the Myasthenia Gravis patient registry funded by the MGFA. He serves as a mentor on numerous K awards, PhD and master’s students and teaches in various national and international short courses.

Jeannine Heckmann, MBChB, PhD

Professor Jeannine Heckmann is a consultant neurologist at the University of Cape Town (UCT) and Groote Schuur Hospital, located in Cape Town, South Africa. Her research interest in Myasthenia Gravis started in 1994-5 with a 2-year laboratory fellowship in the Neurosciences Group at the Institute of Molecular Medicine, Oxford.

She heads the neurology research group in the UCT Neurosciences Institute, which has a strong research focus on problems that African patients with Myasthenia Gravis (MG) experience in a resource limited setting and with high prevalence of HIV-infection and tuberculosis. Her group also has a research interest in inherited neuromuscular genetics and ALS/MND genomics in Africans.