Ammar AL-CHALABI

Professor Of Neurology And Complex Disease Genetics

United Kingdom of Great Britain and Northern Ireland

Ammar Al-Chalabi is Professor of Neurology and Complex Disease Genetics at King’s College London where he is Director of the King’s Motor Neuron Disease Care and Research Centre. His research focuses on causes, modifiers and potential treatments for ALS. He is co-Director of the UK MND Research Institute, Programme Chair of the International Symposium on ALS/MND, and is a National Institute for Health Research Senior Investigator. His work has been recognized by multiple honours, including the Forbes Norris Award from the International Alliance of ALS/MND Associations, the Healey Center International Prize for Innovation in ALS, the Sheila Essey Award from the American Academy of Neurology, a Gold National Clinical Excellence Award and Fellowship of the UK Academy of Medical Sciences. He is a Visiting Fellow at the Perron Institute for Neurological and Translational Science, and Lisa S Krivickas Visiting Professor at Massachusetts General Hospital.

Angela GENGE

Professor, Department of Neurology and Neurosurgery, McGill University

Dr. Angela Genge is the Director of the Amyotrophic Lateral Sclerosis (ALS) Clinic at The Neuro, Montreal Neurological Institute-Hospital, and the Executive Director of the ALS Center of Excellence. She earned her MD at Memorial University of Newfoundland, completed her residencies at McGill University, and completed a Fellowship in Neuromuscular Diseases at The Neuro. She obtained both Canadian and American certifications in internal medicine and neurology. During her tenure as Executive Director of the Clinical Research Unit (CRU) at The Neuro from 2004 to 2023, she established it as one of the largest neurological clinical research centers in Canada, home to a first-of-its-kind Phase 1 Unit dedicated to neurological diseases. Recognized as an international leader in clinical research and an expert in rare neurological conditions, Dr. Genge has led trials in ALS, dementias, myopathies, neuropathies, myasthenia gravis, and pain. Dr. Genge has extensive experience in trial design and drug development, from early-phase studies to real-world evidence programs, as well as regulatory and medical affairs. She has served as a consultant for biotech companies specializing in rare diseases and has been a member of numerous advisory boards, and data and safety monitoring boards. Her work and dedication have been acknowledged with multiple awards, including the 2023 Wings Over Wall Street Award, the 2018 Forbes Norris Award from the International Alliance for ALS/MND Associations, and the Governor General’s Diamond Jubilee Award. Dr. Genge currently leads ACCESS ALS and serves on the executive committees for CAPTURE ALS, TRICALS, Precision ALS, the ALS Network, and the WFN MND Study Group.

Calaneet BALAS

President & CEO, ALS Association

Calaneet Balas became CEO and President of The ALS Association in December 2017. She joined the organization in June 2016 as Chief of Strategy, leading all three mission areas including global research, public policy and care services, which work in an integrated fashion to find a cure, advance treatments and enhance the quality of life for people living with ALS. Prior to joining the fight against ALS, Calaneet served as Chief Executive Officer of the Ovarian Cancer National Alliance (OCNA). In this leadership role she had numerous accomplishments, leading advocacy and awareness efforts while advancing research initiatives including collaborating with a partner organization to create the largest global organization dedicated to ovarian cancer research, advocacy and patients, Ovarian Cancer Research Fund Alliance, which merged in January of 2016. Ms. Balas also worked at the Arthritis Foundation, where she was part of an executive team that integrated and restructured four separately incorporated chapters into one region representing the Arthritis Foundation. She served as Chief Strategy Officer of the newly created Mid-Atlantic Region of the Arthritis Foundation from 2010 until September 2012. Previously, she led as President and CEO of the Arthritis Foundation’s Metro DC Chapter from 2005-2009, bringing financial stability to the chapter and increasing its fundraising efforts. Calaneet joined the Board of Directors of the International Alliance of ALS/MND Associations in December 2017 and was elected Chairwoman in December 2018. She also sits on the board of the Truman State University Foundation. Ms. Balas holds a Master of Business Administration from Herriot-Watt University, a Master of Science in Human Movement Science Education from the University of Memphis, and a Bachelor of Science in Exercise Science from Truman State University.

David CAPELLE

Palliative Care Consultant, University Malaya Medical Centre

Dr David Capelle graduated from the Medical School of Hannover (Germany) and trained in internal medicine and palliative care at the University of Malaya Medical Centre (UMMC). He has been involved in providing palliative care at the multidisciplinary MND clinic. His research interests include quality of life among PALS and CALS, non-invasive ventilation, spiritual care, alternative and augmentative communication as well as MND epidemiology. As an academic and clinical teacher he has been training fellows to deliver palliative care for PALS throughout the country, including outside the scope of multidisciplinary clinics.

Dongsheng FAN

Emma SCOTTER

Head Of Motor Neuron Disease Research Lab, University Of Auckland

Associate Professor Scotter leads New Zealand’s programme of MND Research. She is head of the Motor Neuron Disease Laboratory at the University of Auckland, which studies MND in human cells and tissues, with particular focuses on genetics, transcriptomics, protein aggregation, and neuropathology. She established the NZ MND Research Network, acts as NZ representative for the Australian MND Preclinical Research Collective driving team, is a research advisor to MND NZ and the NZ MND Patient Registry, and co-leads the NZ MND Genetics Study delivering clinically validated results to patients.

Gen SOBUE

President at Aichi Medical University

In 1975, graduated from Nagoya University, School of Medicine. From 1981, worked as a lecturer and an associate professor at Aichi Medical University. In the meanwhile, 1982 to 1985, worked as an assistant professor at the University of Pennsylvania, USA. In 1995, appointed as a professor of neurology at Nagoya University Graduate School of Medicine. From 2009 to 2012, served as the dean of Nagoya University Graduate School of Medicine. From 2015, worked as a director of Brain and Mind Research Center at Nagoya University. From 2019, serve as a president at Aichi Medical University.

Hideyuki OKANO

Distinguished Professor, Keio University

Hideyuki Okano received his M.D. (1983) and Ph.D. of Medical Science (1988) from Keio University. After a postdoctoral fellowship at Johns Hopkins University School of Medicine, he became a Professor at Tsukuba University (1994), Osaka University (1997), and returned to Keio University in 2001. He served as Dean of Keio University School of Medicine/Graduate School of Medicine (2007-2021) and was appointed Visiting Professor at MIT in 2022. He is currently the Director and Distinguished Professor of Keio University Regenerative Medicine Research Center. He was awarded numerous honors, including the Medal with Purple Ribbon (2009), the Erwin von Bälz Prize (2014), and the Uehara Prize (2022). Currently, he is the President of the Japanese Society for Regenerative Medicine and the President-Elect of the ISSCR, focusing on stem cell therapies for spinal cord injuries and iPSCs-based modeling and drug development of neurodegenerative diseases such as ALS and Alzheimer’s disease.

Josiah CHAI

Jun-An CHEN

Deputy Director, Instiute Of Molecular Biology, Academia Sinica

The focus of research in my laboratory is to elucidate how neurons establish individual identity in the developing nervous system and why only specific neuron subtypes are vulnerable to neurodegenerative diseases. We tackle these questions by studying non-coding RNAs and their roles during motor neuron (MN) generation and degeneration. My lab uses mouse and human embryonic stem cells, induced pluripotent stem cells, and mouse/chicken animal models to investigate MN development and disease. We have developed a series of stem cell lines and animal models to study the functions of microRNAs and lncRNAs by “gain-of-function” and “loss-of-function” approaches. Further, we perform single-cell multiomics on healthy and ALS iPSC-derived MNs to functionally characterize non-coding RNA pathologies in MNs. In this talk, I will illustrate several new topics, including how lncRNA form condensates to perpetuate neuronal fate and the progress of the miRNAs and their application in MN diseases.

Jung-Joon SUNG

Professor, Seoul National University Hospital

Jung-Joon Sung received his MD, PhD from Seoul National University College of Medicine, Seoul Korea. He completed residency and neuromuscular fellowship in Neurology, Seoul National University Hospital. He has been a full professor and director of neuromuscular division at Seoul National University Hospital since 2014. He is focusing on translational medicine for ALS and recently, dedicated on the development of cell and gene therapy to cure ALS. He has authored or co-authored 131 international and 46 national publications. He has applied more than 20 international patents and registered 7 patents. He is leading KALSA since 2018.

Kongkiat KULKANTRAKORN

Professor in Neurology, Thammasat University

Current position: - Professor in Neurology, Faculty of Medicine, Thammasat University, Thailand - Director of Health Innovation Center of Thammasat University Hospital Education: - M.D. Faculty of Medicine, Ramathibodi Hospital, Mahidol University, Bangkok, Thailand - Residency: Saint Louis University School of Medicine, St. Louis, Missouri, USA, - Fellowship: Neuromuscular diseases/EMG Fellowship , Washington University, St. Louis, Missouri, USA Experiences: Past President of Thai neuromuscular and electrodiagnostic medicine society; Executive committee of the Neurological Society of Thailand; Thai association for the study of pain. Awards: Fellow of The Royal Society of Thailand, Distinguished Professor of the year in health science, Thammasat University, ASEAN Pain Society. His areas of clinical and research interest include neuromuscular diseases and pain. He authors of over 160 articles and book chapters. He is the principal investigator in many clinical trials in neuromuscular disease and neuropathic pain.

Leonard VAN DEN BERG

Professor of Neurology, University Medical Center Utrecht

Leonard H. van den Berg is Professor of neurology with a Chair in Motor Neuron Disorders at the University Medical Center Utrecht in the Netherlands. He is founder and director of the Netherlands ALS Center, and chair of the European Network to Cure ALS (ENCALS), a network of the European ALS Centres, and of TRICALS, a European Trial Consortium. He is author of more than 700 peer-reviewed publications in Neurology, Neuroscience, Genetics, Bioinformatics, Trial Innovation and Epidemiology. His dedication to patient care and research has been recognized by the Sean M. Healey International Prize for Innovation in ALS Research, the Forbes Norris Award, the Winkler Medal, and the Sheila Essey Award, and has been appointed a life member of The Royal Netherlands Academy of Arts and Sciences.

Lezanne OOI

Professor, University of Wollongong

Lezanne Ooi is a Professor in the School of Science at the University of Wollongong, Australia and Group Leader of the Neurodevelopment and Neurodegeneration Lab. Her research speciality is cellular neuroscience and the regulation of neuronal function and neuroinflammation in neurodegenerative diseases. The Ooi lab uses electrophysiology, imaging and a range of cell and molecular biology techniques to investigate disease mechanisms and for drug discovery, using induced pluripotent stem cells, tissue and disease models.

Merit CUDKOWICZ

Chief of the Massachusetts General Hospital Neurology Service

Dr. Merit Cudkowicz is the Chief of the Massachusetts General Hospital Neurology Service, Director, Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston. Dr. Cudkowicz is one of the founders and former co-directors of the Northeast ALS Consortium (NEALS), a group of over 140 clinical sites in the United States, Canada, Europe and the Middle East dedicated to performing collaborative academic-led clinical trials and research studies in ALS. She is leading the first Platform Trial initiative in ALS and is also the Principal Investigator of the Clinical Coordination Center for the National Institute of Neurological Disorders and Stroke’s Neurology Network of Excellence in Clinical Trials (NeuroNEXT). Dr. Cudkowicz mentors neurologist in careers in experimental therapeutics.

Michelle FARRAR

Child Neurologist

Dr Michelle Farrar is Professor of Paediatric Neurology and Neuroscience at UNSW Medicine and Sydney Children’s Hospital Network (SCHN). Her work focuses on spinal muscular atrophy and neurodegenerative diseasess in children. She is an Australian National Health and Medical Research Council Investigator (Emerging Leader), on the topic of “Improving health outcomes for children with rare neurological diseases with genomic technologies”. She directs the multidisciplinary neuromuscular clinic and clinical research program at SCH. Her work includes clinical care, training of residents and fellows, clinical research and collaborating with scientists in translational research. Dr. Farrar is a principal investigator in spinal muscular atrophy clinical trials, and the clinical lead for the Australian SMA newborn screening pilot programme and clinical guidelines. She is medical director for Muscular Dystrophy NSW and a member of the International Rare Diseases Consortium Therapies Scientific Committee.

Ruben VAN EIJK

Shyuan NGO