The role of the International Alliance of ALS/MND Associations’ Scientific Advisory Council (SAC) is to be a centralized resource to review and provide global perspective on scientific and biomedical announcements, information and opportunities relating to ALS/MND.
Chair of the SAC
Kuldip Dave, PhD
Vice President, Research, The ALS Association
Dr. Kuldip Dave is Vice President of Research at The ALS Association. He is a former director of research programs at The Michael J. Fox Foundation for Parkinson’s Research, where he worked for 9 years developing and implementing the Foundation’s ambitious research vision in the biology of Parkinson’s. Dr. Dave received his undergraduate degree in biology from Rutgers University, and a Ph.D. in pharmacology and physiology from Drexel University College of Medicine and worked in biotech/pharma industry for 5 years prior to joining the non-profit philanthropy world.
Council Members
Bec Sheean, PhD
Director
Bec Sheean, PhD, is the FightMND’sfocus is on funding translational research projects to bring potential treatments and clinical trials to MND patients in Australia. As Research Director, Sheean oversee the Research Grant schemes, which support pre-clinical and clinical MND research projects throughout Australia and internationally, as well as FightMND-funded Clinical Trials. Through her role, she liaises with researchers, clinicians, pharmaceutical companies, CRO’s and Government to develop large scale, collaborative MND research projects. In this role, she also co-ordinated the Programme and running of the FightMND Australasian MND Symposium.
Christopher J. McDermott, MD, PhD
Professor of Translational Neurology, NIHR Research Professor, the University of Sheffield, Sheffield Institute for Translational Neuroscience
Professor Christopher McDermott studied for his medical degree at the University in Leeds, UK graduating in 1994. He then continued in general medical and specialist neurology training in Leeds before taking up a clinical research training fellowship at the University of Newcastle upon Tyne. He moved to the University of Sheffield with Professor Dame Pamela Shaw in 2000 to undertake his Wellcome Trust Research Training PhD Fellowship and to complete his Specialist Training in Neurology to become a Consultant Neurologist in 2006. Professor McDermott is now the Professor of Translational Neurology at SITraN and a Consultant Neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust regularly undertaking specialist MND and neuromuscular clinics in Sheffield.
The main drive of Professor McDermott’s research programme is developing the evidence base for delivering supportive and symptomatic care for patients living with motor neuron disease. He also undertakes clinical trials in MND and is interested in how trials can be delivered in a more inclusive manner and lead to answers about potential therapies much quicker. He collaborates nationally and internationally, chairing the UK MND Clinical studies group and being an executive board member of ENCALS and TRICALS.
Jinsy Andrews, MD
Associate Professor of Neurology, Director of Neuromuscular Clinical Trials
Jinsy Andrews, MD, MSc, FAAN is an Associate Professor of Neurology, in the Division of Neuromuscular Medicine and serves as the Director of Neuromuscular Clinical Trials. She currently oversees neuromuscular clinical trials and cares for patients with neuromuscular disease, primarily with Amyotrophic Lateral Sclerosis (ALS). Dr. Andrews has extensive experience in all phases of human clinical trials and drug development in both the academic and industry settings. Dr. Andrews is the elected co-chair of the Northeastern ALS (NEALS) Consortium, which is a network of over 100 ALS clinical research centers internationally. She is also elected to the National Board of Trustees of the ALS Association and is a Fellow of the American Academy of Neurology (FAAN). Dr. Andrews has also received the Diamond Award for ALS clinical research from Wings Over Wall Street and the Muscular Dystrophy Association.
Jeannine Heckmann, MD, PhD
Associate Professor of Neurology, University of Cape Town, South Africa
Dr. Jeannine Heckmann is Associate Professor of Neurology at the University of Cape Town, Cape Town, South Africa. She is director of the Neurology Research Group and the Neuromuscular service at Groote Schuur Hospital and the University of Cape Town. Her group has been involved in addressing clinical and molecular genetic based research questions related to neuromuscular diseases within the African context. An emerging research goal has been to include individuals with African genetic ancestry in the global ALS genomics challenge to discover new ALS targets and therapies. As such her group is part of the US-based CReATe consortium which is a collaborative effort to discover biomarkers and therapies for ALS and related disorders.
Maria del Mar Amador
Neurologist, France
Dr. Maria del Mar Amador is a clinician scientist and neurologist with a long-standing commitment to improving care and advancing research in ALS/MND, with a particular focus on individuals at genetic risk. For over a decade, she has been deeply involved in the care of ALS/MND patients at the Paris ALS Center (Paris, France), and for the past eight years she has led a specialized neurogenetics clinic dedicated to presymptomatic ALS/MND, providing genetic counseling, longitudinal follow-up, and support during phenoconversion. In parallel, she conducts fundamental and translational research at the Paris Brain Institute (Paris, France) within the DecodeALS team (Causes of ALS/MND and Mechanisms of Motor Neuron Degeneration), investigating the genetic determinants of ALS/MND and the mechanisms driving motor neuron degeneration. Her scientific work is matched by a strong commitment to ethical governance: she serves on an Institutional Review Board, the French National Commission for Research Involving Human Subjects (CNRIPH), and the Ethics Committee of the Paris Brain Institute, ensuring that research and initiatives involving patients and genetically at-risk individuals are developed responsibly and in line with core ethical principles and respect for persons.
Martha Peña Preciado, MD
Neurologist, Colombia
Dr. Martha Peña Preciado is a neurologist at the Instituto Roosevelt in Bogotá, Colombia.
Martina de Majo, PhD
Scientific Director, International Alliance of ALS/MND Associations
Martina de Majo, PhD, has extensive experience researching disease mechanisms of ALS/MND and Frontotemporal Dementia (FTD). Dr. de Majo earned her Bachelor’s degree in Biotechnology and Master’s degree in Pharmaceutical Biotechnology with honours from the Sapienza University of Rome (Italy). She then received her PhD in Clinical Neuroscience from King’s College London (UK) and completed her postdoctoral training at University of California, San Francisco (USA).
In addition to her academic training, Dr. de Majo worked as a principal investigator in the industry sector, directing several National Institutes of Health projects around ALS/FTD disease in vitro modelling. She joined the Alliance as Scientific Director in 2024 and has been coordinating the Alliance research portfolio since.
Nadia Sethi, DDS
CEO, North Star ALS
Dr. Nadia Sethi is the CEO of North Star ALS, a nonprofit organization dedicated to connecting people affected by ALS/MND with the research shaping the future of the disease. North Star ALS works to ensure ALS/MND families are meaningfully engaged in research whether as study participants, contributors to better research questions and trial design, or informed partners empowered with clear, accurate scientific information. A dentist by training, currently completing a MS in Pharmacy focused on Clinical Pharmacogenomics and Precision Medicine, and an ALS/MND advocate for many years, Nadia’s work is deeply personal. She lost her husband to ALS/MND and has been involved in numerous ALS/MND focused scientific initiatives since his diagnosis, all with the intent of driving a stronger research pipeline. She has also established and manages a social media community of over 10,000 members who discuss current ALS research opportunities and findings. Through North Star ALS, she aims to combine her clinical, educational, and lived experience to advance ALS/MND science in partnership with the community and researchers.
Nortina Shahrizaila
President of the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS)
Dr Nortina Shahrizaila is Professor of Neurology and Consultant Neurologist at
Universiti Malaya in Kuala Lumpur, Malaysia. She has subspecialty clinical and
research interests in the field of neuromuscular disorders, including motor neurone
disease/amyotrophic lateral sclerosis (MND/ALS) and inflammatory neuropathies.
She leads the multidisciplinary MND/ALS clinic at Universiti Malaya Medical Centre.
She has served as Secretary of the International Federation of Clinical
Neurophysiology (2022-2024) and is currently the President of the Pan-Asian
Consortium for Treatment and Research in ALS (PACTALS).
Piera Pasinelli, PhD
Director, Jefferson Weinberg ALS Center, Frances & Joseph Weinberg Professor in Neuroscience
Piera Pasinelli is the Frances & Joseph Weinberg Professor in Neuroscience at Jefferson University and the founder and Director of the Jefferson Weinberg ALS Center. For 12 years (2008-2020) she has been the Science Director of the Robert Packard Center for ALS Research at Johns Hopkins, where she is now a member of the Scientific Executive Committee.
Pasinelli graduated with a dual Bachelor and Master in Science from the University of Milan, Italy, where she studied Chemistry and Technology in Pharmaceutical Industry. She then obtained her PhD in Neuro-biochemistry for the University of Utrecht, The Netherlands (Rudolf Magnus Institute for Neuroscience). After graduating, she moved to the United States where she started her career working on understanding the molecular mechanisms underlying ALS pathogenesis, first as a post-doctoral fellow in Dr. Bob Brown’s laboratory at Massachusetts General Hospital-Harvard Medical School and, then, as an Instructor in Neurology at Harvard Medical School. In 2006, after 11 years in Boston, Dr. Pasinelli joined Thomas Jefferson University as the co-director of the Frances & Joseph Weinberg Unit for ALS Research, the area’s first and only research unit solely dedicated to the basic and translational study of ALS. In 2016, under Dr. Pasinelli’s leadership Jefferson expanded its ALS program adding a multidisciplinary clinic and a clinical-research program to complement its basic science laboratories and launching the Weinberg ALS Center. The Weinberg Center is structured around a new academic healthcare model at Jefferson, called Clinical and Research Integrated Strategic Programs (CRISPs), in which programs are developed based on disease focus, rather than medical or research specialty, creating a collaborative environment in which members from multiple disciplines work together around the patients’ needs, with a 360-degree approach that also includes research and innovative technology. Basic research is present in clinic, educating and involving the patients every step along the way.
Acknowledged as an expert in the cell death processes that overtake the central nervous system in ALS, Pasinelli has been working on understanding the pathogenic mechanisms that trigger ALS for the past twenty-five years. She received several awards for her commitment to science in ALS, including the Wings Over Wall Street Award from the Muscular Dystrophy Foundation and the Flame of Hope award from the ALS Association. Pasinelli’s background in neuro-biochemistry and her familiarity with the pharmaceutical industry and drug design, allow her to oversee the 360 bench-to-bedside approach taken to accelerate the pace to drug discovery for effective therapies for ALS.
Qing Liu, MD, PhD
Neurologist, China
Dr. Qing Liu is Associate Professor of Neurology in Peking Union Medical College Hospital, Beijing, China. She had been a neurologist after having received her MD. She obtained her PhD in medical genetics in Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing. Her research and clinical activities are dedicated to the cellular basis and therapeutics of people with neurogenetic disorders, especially Amyotrophic Lateral Sclerosis (ALS).
She has published papers in peer-reviewed journals and is in charge of national scientific research projects. She mentors young undergraduates in clinical and molecular-genetic investigation of ALS and related neurodegenerative disorders. In the future, investigation on new achievable ALS models, like patient-derived induced prurient stem cell (iPSC), would be her main focus of interest, hoping to establish initiatives of biomedical breakthrough for ALS.