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
Nicholas Cole, PhD
Head of Research, MND Association
Dr. Nicholas Cole completed his PhD at University of St. Andrews in Scotland, UK, before completing research postdocs in St. Andrews and Dundee, Scotland, and Sydney, Australia. Nick started began his own lab in the University of Sydney, modelling ALS/MND in zebrafish, before being helping to establish the MND Research Centre at Macquarie University in Sydney. Nick returned to the UK with his family and dog “Vegemite” to take up his position as Head of Research at the MND Association in 2018. Nick is a keen kite surfer and Guinness world record holder after his “kitethereef” MND fundraiser in 2015.
Council Members
Adriano Chiò, MD
Neurologist, Italy
Dr. Adriano Chiò is a neurologist currently working in Torino, Italy. He is Professor of Neurology and Director of the ALS Center at the University of Torino and the Città della Salute e della Scienza Hospital in Torino. He is also Director of the ALS Expert Center in Torino, which aims for optimal diagnostic work-up, care and treatment for patients with ALS and other motor neuron diseases in Piedmont. He leads the Italian ALS Genetic (ITALSGEN) Consortium. Adriano Chiò, whose main areas of research are epidemiology, cognition, neuroimaging and genetics of ALS, is best known for his research on risk of ALS in soccer players, the phenotypic heterogeneity of ALS and has contributed to the discovering of several ALS genes, including C9ORF72, VCP, MATR3 and KIF5A. He has published over 330 papers in peer-reviewed journals. He was awarded the 2015 Sheila Essay Award, presented by the American Academy of Neurology and ALS Association.
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.
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.
Caroline Ingre, MD, PhD
Neurologist, Director, ALS Center at Karolinska University Hospital
Dr. Caroline Ingre is a specialist in neuromuscular disease, and has been working with ALS for more than 10 years. She is Head of the ALS Center at Karolinska University Hospital which focuses on development and improvement of quality care and ALS care processes with focus on patients own reporting. She created a national ALS registry in Sweden and also the Karolinska Treatment Center, a national center solely focused on clinical trials for ALS. She has initiated several collaborations between Universities and University Hospitals in Sweden and hosts the national clinical ALS meeting.
Dr. Ingre also leads an ALS research group at Karolinska Institute with main interests in epidemiology, risk and prognosis of ALS disease, the development of imaging methods, biomarker studies and psychological influence on 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.
Martina de Majo, PhD
Scientific Director, International Alliance of ALS/MND Associations
Martina de Majo, PhD, has extensive experience researching disease mechanisms of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia (FTD) and is passionate about making a difference for patient struggling with these diseases. Martina graduated from her bachelor’s degree in biotechnology and master’s degree in pharmaceutical biotechnology with honours at the University of Rome “La Sapienza” (Italy). She then received her PhD in Clinical Neuroscience from King’s College London (London, UK) and completed her postdoctoral training at University of California, San Francisco (UCSF, California, USA). From 2021 to 2023, Martina was the Director of Research and Development at Synapticure, a specialty telehealth clinic transforming the experience & outcomes of neurodegenerative disease for patients and caregivers.
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.
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.
Martha Peña Preciado, MD
Neurologist, Colombia
Dr. Martha Peña Preciado is a neurologist at the Instituto Roosevelt in Bogotá, Colombia.
Nadia Sethi, DDS
Director of Community Outreach and Engagement, ALS Therapy Development Institute
Dr. Nadia Sethi is Co-Chair of the Northeast ALS Consortium Patient Education and Advocacy Committee. A dentist by training, she transitioned to research focused ALS advocacy after her husband’s diagnosis with the disease in 2019. She serves on the Programmatic Panel for the Department of Defense’s ALS Research Program, the Scientific Advisory Council for the International Alliance of ALS/MND Associations, and the Leadership Board of Genetic ALS and FTD: End the Legacy. She also manages a social media community of over 7,000, ALS Clinical Trials and Research, to share scientific content with the patient community. Previously she served as Director of Community Outreach at ALS TDI. Nadia is currently pursuing a Master’s in Pharmacy with a focus on Clinical Pharmacogenomics and Precision Medicine at University of Florida.
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.
David Taylor, PhD
Vice President, Research & Strategic Partnerships at ALS Society of Canada
Dr. David Taylor has a degree in Biomedical Toxicology and graduated in 2006 with a PhD in Pathology from McGill University in Montreal. During his doctoral studies, David focused his efforts on understanding mechanisms that could lead to potential therapeutics in ALS and this has fueled his passion for the disease and the ALS/MND community for the past 17 years. He subsequently conducted six years of postdoctoral work at the EPFL in Lausanne, Switzerland and at the University of Toronto before joining ALS Canada in 2012.
David’s role at ALS Canada has been to oversee and advance the Canadian national research program. In this capacity, he provides strategic expertise, advice and direction to all stakeholders of the organization, manages the grants and awards program to deliver donor dollars effectively, identifies and pursues new sources of funding, facilitates new collaborations within and for the ALS research community, profiles Canadian researchers, and strives to communicate all ALS research in an accessible and understandable manner.
Board Liaison
Pablo Aquino
Pablo Aquino is a Certified English/Spanish Translator, Journalist, and the Secretary of the ALS Association of Argentina (Asociacion ELA Argentina), first and only charity exclusively focused on ALS in the country. He was one of the Association’s co-founders in November 2011, and has been assisting in the management of projects along with President Dario Ryba and the rest of the board, and developing the international relations of this institution since then. He was the coordinator and personal interpreter of international visits in Argentina, such as Drs. Lucie Bruijn, Jonathan Glass, Ammar Al-Chalabi, Hiide Yoshino and Angela Genge. Pablo has been the speaker for Asociacion ELA Argentina in every Annual Meeting of the International Alliance of ALS/MND Associations since 2013, and also participated in the constitution of UNELA, the Latin American Union of ALS/MND Associations.
His older and only brother, Alejandro, died of ALS/MND in April 2017.