Ahmad Yanuar SAFRI
Indonesia
Ahmad Yanuar SAFRI
Dr.
University of Indonesia
Albert KOO
International Alliance of ALS / MND
Diagnosed in 2018 with ALS and have since been actively involved in creating awareness
of the ALS / MND in Malaysia both in groups and individually. He is currently a committee
member of the Patient Advocacy Group of the International Alliance of ALS / MND. He has
been practising as a civil litigation lawyer for the past 28 years while being involved with
several non governmental organisation of various interest groups including one in
empowering the poor of the mountains. Albert is also a firm believer of mental health and is
involved with the development and awareness program on mental health. Albert is married
to Adele Chow and they have an adult daughter, Adrielle.
Amirul Asyraf AB GHAPAR
Malaysia
Amirul Asyraf AB GHAPAR
Neurologist in training, currently working at Hospital Kuala Lumpur. Received his undergraduate training at the University of Bristol in the UK before obtaining the MRCP Specialty Certificate in 2019. Adept in clinical work, involved in clinical research especially in Neuroinfection and Myasthenia Gravis, as well as tutoring in several clinical workshops for post-graduate specialised training in internal medicine. Seeking to further his Fellowship training in Neuromuscular and Clinical Neurophysiology.
Ammar AL-CHALABI
United Kingdom
Ammar AL-CHALABI
Clinician Scientist
King's College London
Specialty: Neurology and Complex Disease Genetics
Ammar Al-Chalabi is a Clinician Scientist at King’s College London. His research focuses on causes, modifiers and potential treatments for ALS. He co-leads the UK National MND Research Institute, chairs the International Symposium on ALS/MND, and is a National Institute for Health Research Senior Investigator. His work has been recognized by multiple prizes, 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 the Charcot Young Investigator Award from the MND Association.
Angela GENGE
Executive Director, Clinical Research Unit (CRU) & Director, ALS Clinical
Montreal Neurological Institute and Hospital
Dr Angela Genge is the Executive Director of the Clinical Research Unit (CRU) and Director of the ALS Clinical at the Montreal Neurological Institute and Hospital. Under her direction, the CRU has grown from a small centre with a handful of staff and trials to encompass over 60+ staff members and over 100 industry and investigator-sponsored Phase I-IV clinical trials spanning the spectrum of neurological diseases. It is now a globally renowned Phase 1 Unit and ALS Global Centre of Excellence. Dr Genge herself has been principal investigator on well over 150 sponsored trials since 1994, and she has mentored a dozen fellow physicians to become clinical trialists in their own right.
Over the course of the past 30 years, Dr Genge has come to be a respected key opinion leader in the space of trial design and development. She has served as Global PI for both ALS-Pharma and Alexion; on steering committees for MT-Pharma, Cytokinetics, Alexion, Biogen, among others; and consulted on trial design for dozens of trials. Her expertise has also led her to be a sought-after chair for advisory boards, where she brings together the voices of all stakeholders and successfully managing the dynamics between sponsors and key opinion leaders.
Though now double board certified in Neurology and Internal Medicine, Dr Genge was originally trained as a physio. It should come as no surprise therefore that Dr Genge is deeply committed to the development of better outcomes measures in Rare Diseases in Neurology, for which she is currently leading four global initiatives.
Anthony Cutrupi
Australia
Anthony Cutrupi
University Of Sydney/Concord Repatriation General Hospital
Specialty: Neurobiology, Induced Pluripotent Stem Cells
Anthony Cutrupi is an early career postdoctoral scientist, receiving his PhD from the University of Sydney. During his PhD, Anthony established a comprehensive stem cell research program at the Northcott Neuroscience Laboratory (NNL) – implementing customised in-house protocols for iPSC culturing, motor neuron differentiation and 3D neurosphere platforms for examining axonal phenotypes. Anthony’s work has focused on generating iPSC-derived motor neurons models of rare neurodegenerative diseases and has been recognized nationally and internationally, receiving the Griffith Hack 2019 “Innovation Prize”, the Australian Society for Stem Cell Research (ASSCR) NSW 2021 award for “best platform talk”, and the “The Johnathan Pembroke Prize” at the 2022 international Peripheral Nerve Society (PNS) Meeting.
Anura PETERS
Tan Tock Seng Hospital
Specialty: Respiratory Theraphy
As the founding Respiratory Therapist of the Home Ventilator and Respiratory Therapy Services (HVRSS), she has been a part of the team, expanding the scope of home ventilation in Singapore. Having been awarded the Health and Manpower Development Fellowship Award in 2010 and 2017, it has afforded her the opportunity to learn in renowned centers such as the Royal Brompton (London), Hôpital Pitié-Salpêtrière (Paris) and Westpark Healthcare (Toronto). Armed with the knowledge learnt, she and the HVRSS team have been instrumental in reaching out to patients island-wide to provide the necessary care, education and establishing the standard of care in the community for patients requiring respiratory support.
Arada ROJANA-UDOMSART
Thailand
Arada ROJANA-UDOMSART
Neurological Institute of Thailand
Specialty: Neurology
Arada Rojana-udomsart, M.D., Ph.D., graduated from Faculty of Medicine, Ramathibodi Hospital, Mahidol University, Bangkok, Thailand. She did her neurology training at the same center. She has been interested in neuromuscular diseases and perused her study at Centre for Neuromuscular and Neurological Disorders, The University of Western Australia, Australia.
Dr Arada has been a consultant neurologist at, Neurological Institute of Thailand, Department of Medical Services, Ministry of Public Health. She has also been the director of Health Reginal Medical Office 2, Department of Medical Services, Ministry of Public Health, and the Scientific Chairman, Thai Neuromuscular and Electrodiagnostic Medicine Society.
Atcharayam NALINI
National Institute Of Mental Health And Neuro Sciences
Specialty:Neurology (Neuromuscular Disorders)
Expertise in Clinical diagnosis, management and research in Acquired and Inherited Neuromuscular disorders. Experience on diagnosing and managing ALS for 2.5 decades. Has the largest series of Hirayama disease and described several phenotypes. Has experience of operating on more than 200 cases of Hirayama disease cases with long term follow-up. More than 200 publications on Neuromuscular disorders. Leads the only Multidisciplinary Neuromuscular disorders clinic with more than 12000 cases registered. Executive Board Member of the AOMC. Chairman of the “Neuromuscular disorders” of the National Consortium for Research and Development on Therapeutics for Rare Diseases and member of the Gene Therapy committee at Indian Council of Medical Research.
Azlina AHMAD-ANNUAR
Malaysia
Azlina AHMAD-ANNUAR
University of Malaya
Balachandran JAYACHANDRAN
Singapore
Balachandran JAYACHANDRAN
Specialty: Cardiopulmonary Physiotherapist
Balachandran is currently working as a Principal Physiotherapist in Woodlands Health Campus. He also holds an IHQ (Institute of Healthcare Quality) faculty post at the National Health Care Group. He has more than two decades of experience in healthcare as a critical care physiotherapist and clinical educator. His special interest is in Early Mobilisation for intubated patients in ICU. His quality improvement project “Early Mobilization in Surgical Intensive Care Unit” (2013) clinched the Gold award for AHMA (Asian Hospital Management Award). The project also clinched the TTSH Milestone Award (2018) for sustaining over 5 years and creating an influence to spread to ICU’s(MICU), Surgical High Dependency(SHD) and General Wards(Surgical). His other interest is in tracheostomy care and decannulation.
Benny NG
MND Malaysia
With more than 30 years in the insurance industry both in the management and sales, now contributing back to society through community work.
Bradley TURNER
Florey Institute Of Neuroscience And Mental Health, University Of Melbourne
Specialty: Preclinical Models
Professor Bradley Turner is a neuroscientist with an international reputation in determining the molecular basis of ALS. He is the Head of the Neurodegeneration Movement Theme and ALS Laboratory at the Florey Institute of Neuroscience and Mental Health, University of Melbourne. He obtained his PhD in biochemistry at the University of Melbourne, followed by postdoctoral positions at the University of Oxford and Florey Institute. He leads a large and ambitious research team using a combination of patient-induced pluripotent stem cells and mouse models for disease modelling and drug development with a several drug candidates advanced to clinical trials in ALS.
Bugyeong SON
Hanyang University Seoul Hospital
Specialty: Nursing
Bugyeong Son is an ALS/MND nurse coordinator at Cell Therapy Center, Hanyang University Medical Center, Seoul, Korea. She has clinical nursing experience in the oncology department and has been involved with ALS/MND since joining Department of Neurology, Cell Therapy Center. She has worked on many collaborative projects, presentations, patient education, and publications in ALS/MND and has become a Director of International Cooperation in the Korean ALS Association since 2019. She received both her Bachelor's and Master's degrees in Science in Nursing from Hanyang University, Seoul, Korea. She is currently interested in clinical research, patient advocacy, and continuing healthcare in ALS/MND.
Calaneet BALAS
United States
Calaneet BALAS
President & CEO, ALS Association
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.
Catherine CUMMINGS
Canada
Catherine CUMMINGS
International Alliance Of ALS/MND Associations
Cathy is the Executive Director of the International Alliance of ALS MND Associations. Cathy has an eclectic mix of work experiences in the Canadian not-for-profit sector including the Canadian Payroll Association, the Canadian Bar Association, and the Canadian Corporate Counsel Association. Cathy was also instrumental in the foundation of In-House Counsel Worldwide an alliance of in-house counsel Associations globally. Cathy has volunteered extensively with United Way, the Canadian Society of Association Executives and many charities including ALS Ontario, ALS Canada, and Ceridian Cares. She holds an MBA from Athabasca University and is a Certified Association Executive. On a personal note, Cathy is married to her wonderful husband Marty, has three awesome children and has a mission nicknamed the “bouquet project” that is trying to reverse the statistic that people are ten times more likely to complain than praise
Chan YEOW
Tan Tock Seng Hospital
Specialty: Anaesthesiology And Intensive Care
Graduated from National University of Singapore School of Medicine in 1994. Obtained Specialist Qualification in Anaesthesiology in 2003.Underwent Fellowship in Intensive Care Training in Victoria, Australia in 2004. Joined register of Sub-Specialty if Intensive Care Medicine, Singapore in 2012 (Register was established in 2012)
Founded Home Ventilation and Respiratory Support Service in Tan Tock Seng Hospital in 2009, and has been Director since 2009. Conducted multiple Chronic Ventilation Courses and Workshops on chronic ventilation in Singapore
Chaur-Jong HU
Shuang Ho Hospital
Speciality: Neurology
I earned medical doctor (M.D.) from Taipei Medical University in 1990 and completed the neurology residency training in Taipei municipal Jen-Ai hospital. I did research fellowship in Washington University, St. Louis, US.
Currently, I am a professor of neurology, working in Department of Neurology, Shuang Ho Hospital, Taipei Medical University, New Taipei, Taiwan. My researches focus on molecular mechanisms, biomarkers and clinical trials of neuro-degenerative diseases, including amyotrophic lateral sclerosis (ALS) and Alzheimer disease. We have ever finished a trial of Tamoxifen, an autophage enhancer, for ALS and explored the TDP43 in blood exosome as a biomarker for ALS.
Cheng-Yin TAN
University of Malaya
Specialty: Neurology
Dr. Cheng Yin Tan graduated from National University of Malaysia in 2003. He went on to pursue his internal medicine training in University of Malaya and obtained both Membership of Royal College of Physician (United Kingdom) in 2010 and Master of Internal Medicine in 2012. He is currently practicing as Consultant Neurologist at University of Malaya Medical Centre and Associate Professor at University of Malaya. He has subspecialty clinical and research interests in the field of neuromuscular disorders and clinical neurophysiology. He is currently the Secretary of the Clinical Neurophysiology and Neuromuscular Section of the Malaysian Society of Neurosciences.
Cheong-Futt SOO
MND Malaysua
Specialty: Productivity & Quality Management
Graduated in Science from the University of Malaya in 1969, majoring in Physics.
Children: 2 boys
Last Positions held:
Director, Malaysian Textile & Apparel Centre
Director of Productivity Research Directorate, Malaysia Productivity Corporation
Pensioner since 1997
Chairman of MND Malaysia 2019-2023 – a patient-centric non-government organization providing non-financial support and services to MND patients and their family members
Pioneer member of MND Malaysia since its inception in 2014
A caregiver for 11 years for my late wife who was diagnosed an MND patients in 2004
Chi-Chen Huang
Specialty: Neurodegenerative Diseases
UBI is the pathological hallmark of ALS and FTLD-U, in which polyubiquitinated TDP-43 is discovered as the major components of these UBI in 95% of ALS patients and 45% FTLD-U patients. My research aims is to understand the mechanisms of TDP-43 degradation pathway and the process of TDP-43 aggregates formation, with the goal to explore novel therapeutic strategies for brain pathologies that occur with TDP-43-related neuropathies.
Chun-Ian SOO
University of Malaya
Specialty: Respiratory Medicine
Dr. CI Soo completed his sub-specialty training in respiratory medicine in 2018. In 2017, he has undergone his fellowship in respiratory medicine and non-invasive ventilation in Tan Tock Seng Hospital in Singapore. Currently, he practices respiratory medicine in UMMC.
Dr. Soo main interest is in acute and chronic respiratory care especially noninvasive ventilation, thoracic ultrasound and interventional pulmonology.
Colleen O'CONNELL
Dalhousie University
Specialty: Physical Medicine & Rehabilitation
Colleen is a professor of Physical Medicine & Rehabilitation and a member of the Canadian ALS Research Network. She is director of the New Brunswick ALS Clinic and an author of the Canadian ALS best practice recommendations and faculty of the Breaking the News in ALS education program. As Co-Chair of the World Health Organization World Rehabilitation Alliance, she collaborates with an international team to advocate for the strengthening of rehabilitation in health systems, including emergency preparedness and response. She has authored and provided technical guidance on rehabilitation in emergencies, with infield emergencies humanitarian work in Haiti, Nepal and Ukraine.
David ALI
Chief Executive Officer
MND Australia
Specialty: Advocacy, Care, Research
David Ali is Chief Executive Officer of MND Australia. He has volunteered for over 20 years to make a difference for people living with motor neurone disease; in Victoria, nationally and globally. He has been President of MND Victoria and of MND Australia and is currently Vice Chair and Treasurer of the International Alliance of ALS/MND Associations. David has also contributed to several not-for-profit Boards in health, education and justice.
David has a background in social policy, has worked in Parliament, government, consultancy and not-for-profits. He has worked at CEO level with a government agency and with a not-for-profit organisation prior to becoming MND Australia’s CEO in March 2021.
David CAPELLE
University of Malaya
David Capelle once very nearly joined neurology subspecialty training before embarking on palliative care. However he stayed close to his early ambition as a member of the Motor Neurone Disease Clinic and looks forward to working together with the neurology community in establishing nationwide care for people living with MND.
David MEISSNER
United States
David MEISSNER
Director of Your ALS Guide
David Meissner is the Director of Your ALS Guide, a free educational website for families impacted by ALS. David is a writer, educator, and content creator from the United States who has develop ededucational content for organizations such as The American Federation of Teachers, National Center for Learning Disabilities, and WETA Public Television. After earning a master’s degree in education from New York University, David taught K-12 students for seven years. When his aunt lost her courageous battle with ALS in 2015, David partnered with his aunt’s Director of Care Services to create Your ALS Guide.
Debra SEOW
Woodlands Hospital
Dhayalen KRISHNAN
Malaysia
Dhayalen KRISHNAN
Hospital Kuala Lumpur
Speciality: Neurology
I am a Neurologist, currently working at Kuala Lumpur General Hospital. I obtained my Bachelor of Medicine and Bachelor of Surgery degree from the University of Malaya in 2010. I had the pleasure of spending a large part of my career in service in the island of Borneo. I completed my physician training in 2015 and subsequently underwent my Neurology fellowship training in Malaysia as well as at the Royal Prince Alfred Hospital in Sydney, Australia. My field of interest includes general neuromuscular disorders, motorneuron disease, autonomic disorders and plasmapheresis in neurological diseases.
Eman TAWFIK
Founder & President, Egyptian Neuromuscular Ultrasound Society
Faculty Of Medicine, Ain Shams University
Specialty: Physical Medicine & Rehabilitation
Dr. Eman is specialized in Electrodiagnosis & Neuromuscular Ultrasound. She has 10 years of experience in NMUS and is certified in neuromuscular & musculoskeletal ultrasound by the American Academy of Physical Medicine & Rehabilitation (AAPM&R-STEP Ultrasound Certificate Program). She received her training in NMUS at Wake Forest School of Medicine in United States as well as in Europe. She is the founder and the president of the Egyptian Neuromuscular Ultrasound Society. Dr. Eman is a national and international neuromuscular ultrasound instructor and has many publications in the field including the guidelines for neuromuscular ultrasound training.
Eu-Way PEK
University of Malaya
Specialty: Rehabilitation Medicine
Joined UMMC 2021, have a keen interest in MND rehabilitation, especially secretion and respiratory management. Also interested in ICU rehabilitation , dysphagia, musculoskeletal and pain rehabilitation.
Gen SOBUE
President, Aichi Medical University | Director, Brain and Mind Research Center Nagoya University
Aichi Medical University
Professor Gen Sobue currently worked as a director of Brain and Mind Research Center at Nagoya University since 2015 and is a president at Aichi Medical University since 2019. He graduated from Nagoya University, School of Medicine in 1975. From 1981, he worked as a lecturer and an associate professor at Aichi Medical University. Professor Sobue worked as an assistant professor at the University of Pennsylvania, USA from1982 to 1985. He was appointed as a professor of neurology at Nagoya University Graduate School of Medicine in 1995. From 2009 to 2012, Professor Sobue served as the dean of Nagoya University Graduate School of Medicine.
Gethin THOMAS
Research Director
MND Australia
Gethin Thomas has been the Executive Director, Research at MND Australia since 2019. He oversees the research grant program and manages national and international partnerships. A key aspect of this role is providing a conduit between research programs and the wider MND community through MND Australia and the affiliated State Associations. Gethin is also Chair of the Scientific Advisory Council of the International Alliance of ALS MND Associations which is a centralized resource to review and provide global perspective on scientific and biomedical announcements, information and research opportunities relating to ALS/MND.
Grace CHU
Hospital Sungai Buloh
Specialty: Neurology
I am a second year Neurology trainee, currently at Hospital Sungai Buloh. I obtained my Medical Degree from UNIMAS in 2012, obtained MRCP (UK) in 2017 and subsequently completed physician training in 2018.
Haruhisa INOUE
Center for iPS Cell Research and Application, Kyoto University
Specialty: Department of Cell Growth And Differentiation
Professor Inoue is currently a Professor at CiRA, Kyoto University, Kyoto, Japan. He is also a Senior Visiting Scientist at RIKEN Center for Advanced Intelligence Project (AIP), Medical-risk Avoidance based on iPS Cells Team. Since 2017, Professor Inoue is the Team Leader at the RIKEN BioResource Research Center (BRC), iPSC-based Drug Discovery and Development Team. He was a postdoctoral fellow for a year at the Neuroregeneration Laboratory, McLean Hospital/Harvard Medical School, Boston, MA, USA in 2004. Aside from being a Research Resident in Kyoto University and National Institute of Neuroscience, Tokyo, he was also a Research Fellow at the Laboratory for Neuropathology, University Medical School of Pecs in Hungary.
Hemangi SANE
Asha Ek Hope Foundation For ALS/MND
Speciality: Internal Medicine
Dr. Hemangi Sane is the founder of Asha Ek Hope foundation for ALS/MND, India and Deputy Director & Head of Research and Development, Consultant Physician at NeuroGen Brain and Spine Institute, Navi Mumbai. Her unique broad and sensitive outlook comes from her experience as a clinician, researcher and as an ALS patient herself. She obtained MBBS degree from the prestigious GS Medical College & KEM Hospital, Mumbai University Then she post graduated with MD, degree in Internal Medicine from the renowned New York Medical College, USA. She is also certified in ‘Precision and Anti-Aging Medicine’ from USA She has more than 20 years of clinical experience in which she has more than 100 scientific peer reviewed publications in International and National medical journals. She has co-authored more than 12 medical books, along with multiple chapters in various International Medical Books. She has received numerous national and international awards. She envisions an independent and better quality of life for patients with ALS/MND. Her positivity, compassion and enthusiasm are an inspiration to others.
Hitomi HASEBE
Japan ALS Association
1976 Barcelona University (faculty of Philosophy and Literature) Spain
2017 Director of Japan ALS Association
Daughter of a patient with ALS who died in 2017 after living as a patient for 24 years
Managing director of JALSA Akita branch.
Ira AGRAWAL
National University of Singapore
Specialty: Neurodegeneration / ALS
Dr Ira Agrawal studies neurodegeneration and ageing using computational approaches at the Healthy Longevity Translational Research Program, Yong Loo Lin School of Medicine, National University of Singapore. As a postdoctoral fellow in Ling Shuo-Chien’s group at NUS, she integrates multi-omics data analysis to gain systems understanding of cell-type contributions to neurodegeneration. Her work has led to the identification of key regulatory targets and cryptic ALS disease events with therapeutic potential, resulting in various high-impact publications, grants, and awards such as the NUS Medicine Outstanding Research Fellow Award, and the Swee Liew-Wadsworth Research Grant Award.
Jeremy SHEFNER
United States
Jeremy SHEFNER
Barrow Neurological Institute
Specialty: Neurology
Jeremy Shefner, MD, PhD, is Professor of Neurology at the Barrow Neurological Institute. Dr. Shefner is co-founder of the Northeast ALS (NEALS) Clinical Trials Consortium. He continues to direct NEALS outcomes and clinical monitoring cores. His research focuses on development of novel outcome measures for ALS trials.
Dr. Shefner has published more than 240 chapters and papers and has served on multiple grant review panels. In 2014, Dr. Shefner received the Sheila Essey Award for ALS Research, and in 2022 was an awardee of the Healey Center International Innovation Prize in ALS. He on the editorial boards of the ALS Journal and Neurotherapeutics. He is neuromuscular section editor of UpToDate.
Jessica MABE
The International Alliance of ALS/MND Associations
Specialty: Programs Coordinator
Jessica was born in London and had a bilingual upbringing in Bogota, Colombia. She relocated to the UK after finishing school, where she completed her university degree in French & German with Business Studies (University of Wales, Aberystwyth), followed by a Masters in Mass Communications from Leicester University (UK), Masters in Digital Marketing and Advertising from the University of Nebrija (Spain), and a Masters in Digital Marketing from the EAN University (Colombia). Jessica developed as a sales and digital marketing professional leading teams in the UK and Ireland within the technology sector.
In 2014, Jessica’s mother got diagnosed with ALS/MND Bulbar onset, and she decided to return to Colombia early in 2015 to help care for her mother alongside her father. Her mother passed away on February 21, 2018, and shortly after she joined ACELA, the Colombian ALS/MND Association as an active volunteer supporting family caregivers in their ALS/MND journey, and in July 2021 she joined the Alliance as Programs Coordinator.
Jinhuan WANG
Beijing Oriental Rain ALS Care Center
Specialty: Care
Cofounders and chairman of Beijing Oriental Rain ALS Care Center. Deputy Director of ALS Fund of China Social Welfare Foundation. Vice Chairman of Rare Disease Rehabilitation Specialized Committee of China Rehabilitation Association for Disabled Persons. Long-term commitment to the advocacy, research promotion, and care and support for ALS patients and their families, and established a "4 + 1 care and support model” for patients with ALS.
Jodi ALLEN
United Kingdom
Jodi ALLEN
The National Hospital for Neurology & Neurosurgery, University College London Hospital NHS Trust (United Kingdom)
Specialty: Clinical Specialist Speech & Language Therapist (Neurology & Neuromuscular)
Jodi has 17 years of clinical-academic experience in the field of adult neurological and neuromuscular disease. Her focus is the assessment and management of dysphagia and motor speech disorders in progressive diseases such as amyotrophic lateral sclerosis. Jodi runs a UK-wide interdisciplinary clinic that uses a combined professional approach to manage dysphagia, cough clearance and secretion issues in this patient group.
Jodi has recently been awarded a clinical doctoral research fellowship to understand the profile of dysphagia in neuromuscular disease 1. She has a particular interest in the use of ultrasound as a tool to support dysphagia assessment and diagnosis. She chairs the international ultrasound speech and language therapy working group and has recently published four peer-reviewed publications which explore the utility of ultrasound in this area.
Josiah CHAI
SPECIALTY: Neurology, EMG, Neuromuscular conditions
Dr Josiah Chai, MBBS, MRCP(UK), FRCP(Edin), FAMS(Neurology), graduated in Medicine from the National University of Singapore in 1994. After completion of Internal Medicine and Advanced Specialty Training in neurology in 2003, he joined the National Neuroscience Institute (NNI) as a neurologist. He did his fellowship in neuromuscular diseases and electromyography at the University of Rochester Neuromuscular Center, New York. He is presently a Senior Consultant and Head of Department of Neurology in NNI (Tan Tock Seng Hospital campus). His special interest is in the evaluation and management of neuromuscular diseases, EMG and muscle histopathology.
Jun-Yup KIM
Hanyang University Medical Center
Specialty: Physical Medicine and Rehabilitiation
2022.3.2.~Present: Clinical Assistant Professor, Department of Physical Medicine and
Rehabilitation, Hanyang University Medical Center, Seoul, Republic of Korea
2020.3 ~ 2022.2.28: Research specialist, Veterans Medical Research Institute, Veterans
Health Service Medical Center, Seoul, Republic of Korea
2019.3~2020.2: Clinical Research Assistant Professor, Department of Physical Medicine
and Rehabilitation, Severance Hospital, Seoul, Republic of Korea
2018.5~2019.2: Clinical Fellow, Department of Physical Medicine and Rehabilitation,
Severance Hospital, Seoul, Republic of Korea
2011.3.2.~2015.2.28.: Resident doctor, Department of Physical Medicine and
Rehabilitation, Severance Hospital, Seoul, Republic of Korea
2010.3.2.~2011.2.28.: Intern, Department of Physical Medicine and Rehabilitation,
Severance Hospital, Seoul, Republic of Korea
2010.2.28.: Bachelor, Yonsei University School of Medicine
Jung-Joon SUNG
South Korea
Jung-Joon SUNG
Director, Neuromuscular Division
Seoul National University Hospital
Specialty: Neuromuscular Disorders (ALS)
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.
Katsushi TAMAKI
Director
Japan ALS Association
Speciality : Assistant for the Disability
I graduated from Tokyo University of Science in 1978. My major is industrial engineering. I studied especially statistics. After graduating, I was in charge of marketing and product planning at a telecommunications equipment manufacturer. During my tenure, I focused on the planning and development of a nurse call system, developed a nurse call system that is easy for ALS patients to operate, and won the highest award in a welfare equipment contest. Currently, I am a director of a facility for the disabled, and a director and international committee member of the Japan ALS Association.
Kay NG
National University Hospital
Specialty: Neurology
Dr Kay Ng is a Senior Consultant with the Division of Neurology, National University Hospital in Singapore, and is co-Director of the Neuromuscular Service. She was awarded the Healthcare Manpower Development Plan, where she completed 2 years of fellowship training in Neuromuscular Medicine at the Washington University in St. Louis. She is a Diplomat of the American Board of Electrodiagnostic Medicine (ABEM) and holds a neuromuscular ultrasound certificate of added qualification.
She is faculty in the internal medicine and neurology residency programs and is an Assistant Professor with the Yong Loo Lin School of Medicine, National University of Singapore.
Khean-Jin GOH
University of Malaya
Specialty: Neurology
Dr Khean-Jin Goh is Professor and Head, Division of Neurology, Department of Medicine at the University of Malaya, Kuala Lumpur. He graduated from National University of Singapore. He trained in Clinical Neurology in Singapore and was Commonwealth Fellow at the University of Oxford, UK, 1999-2000, where he specialised in clinical neurophysiology and peripheral neurology. He was also a Japan Society for the Promotion of Science (JSPS) Fellow at the National Center for Neurology and Psychiatry, Tokyo in January 2005.
Professor Goh’s main research interests are in clinical neurophysiology and neuromuscular diseases. He is currently Executive Board Member of the Asian and Oceanian Myology Centre (AOMC) and Associate (Section) Editor of Neurology Asia, a regional neurology journal. He is a Fellow of the Royal College of Physicians (Glasgow) and Fellow of the Academy of Medicine of Malaysia
Kok-Peng TOH
Motor Neurone Disease Association Singapore
I am a patient living with ALS since my diagnosis in mid-2020. I have been working for a Life Science company for the past 10 years in manufacturing and will continue to do so with the aid of AAC technology. When I was first diagnosed, I couldn’t find a support group for ALS patients, and hence, connected with a few fellow patients and volunteers to establish Motor Neurone Disease Association Singapore in 2021. I am looking forward to all the advancement in technology and medical efforts towards ALS and hopefully be able to see a cure within my lifetime.
Kongkiat KULKANTRAKORN
Thailand
Kongkiat KULKANTRAKORN
Director, Health Innovation Center Thammasat University Hospital
Faculty of Medicine, Thammasat University
Specialty: Neuromuscular Disease
Current position:
- 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;
His areas of clinical and research interest include neuromuscular diseases and pain. He authors of over 150 articles and book chapters.
Kristina JOHNSON
United States
Kristina JOHNSON
QurAlis
Kristina Johnson is the Vice President of Clinical Operations at QurAlis, a clinical-stage biotech company developing precision therapeutics for ALS/MND. Kristina has extensive experience operationalizing clinical trials in Asia-Pacific, and other under-represented geographies, in addition to having overseen global clinical trials for Spinraza in Spinal Muscular Atrophy (SMA).
Lay-Khoon LOO
Seberang Jaya Hospital
Specialty: Neurology
Dr Loo Lay Khoon obtained her medical degree from University Putra Malaysia and awarded a Membership of the Royal Colleges of Physicians (MRCP), of the United Kingdom to practice as Internal Medicine Specialist. She completed her neurology training under Ministry of Health (MOH) Malaysia. Subsequently has her fellowship in Queen Elizebeth Hospital Birmingham, United Kingdom specially trained in neuromuscular diseases.
Dr Loo has special interest in neuromuscular diseases especially neuropathy cases and published several articles locally and internationally in the field of neurology. She is currently the committee member of Clinical Neurophysiology and Neuromuscular Section (CNNS), Malaysian Society of Neurosciences (MSN).
Lim Shu XIAN
Hospital Kuala Lumpur
Dr. Lim Shu Xian is a passionate and dedicated Palliative Physician at Hospital Kuala Lumpur, Malaysia. Dr. Lim's role as both Coordinator and Project Manager for the MND Beyond Borders Education Series in Singapore, Malaysia, and Indonesia from 2021 to 2023 underscores her compassionate commitment to advancing palliative care knowledge and improving the quality of life of patients living with MND/ALS. Her dedication to education will undoubtedly bring about a positive influence on patient care and support.
Liying CUI
Professor of Neurology
Peking Union Medical College Hospital
Specialty: Neurology
- Professor of Neurology, Head of Neurological Department in Peking Union Medical College Hospital.
- The main research work is the ALS, clinical neurophysiology and other neuromuscular disorders especially GBS, CIDP and other neuromuscular diseases. More than 300 papers have published.
- Past President of Chinese Society of Neurology
- Convenor of ALS Collaboration Group, Chinese Society of Neurology
- Vice President of Beijing Rare Diseases Society
- Honorary Editor-In-Chief of Chinese Journal of Neurology
- A member-at large of International Federation of Clinical Neurophysiology (IFCN, 2015-2018)
- Member of WFN ALS Specialty Group Executive Committee
Lydia SOON
Tan Tock Seng Hospital
SPECIALTY: HOME VENTILATION
Lydia graduated with Bachelor Degree in Nursing in Curtin University
of Technology (Aus) and Advance Diploma in Nursing ( Intensive Care)
in Singapore.
She worked in Surgical General Ward and Surgical ICU wards for 10
years before joining Home Ventilation Team as a Nurse Clinician for the
past 8 years .
Manfaluthy HAKIM
Indonesia
Manfaluthy HAKIM
University of Indonesia
Marina KENNERSON
Australia
Marina KENNERSON
ANZAC Research Institute
Specialty: Neurogenetics/Neurosceinces
Professor Marina Kennerson is Group Leader at the Northcott Neuroscience Laboratory, ANZAC Research Institute where she runs the Gene Discovery and Translational Functional Genomics Program for motor neuron disorders including hereditary neuropathies and ALS. The program incorporates multi-omics, iPSC derived motor neuron technologies and C. elegans pre-clinical models, to discover causative genes for disease therapy development. Marina is Chair of the Asian Oceanic Inherited Neuropathy Consortium (AOINC), a Board Member of the International Charcot-Marie-Tooth and Related Neuropathies Consortium (CMTR), serves on the CMT Research Foundation Scientific Advisory Board and is a member of the MND Research Australia Research Committee.
Mario PRADO
Philippines General Hospital
Specialty: Neurology/Neurophysiology/Biostatistics
Dr. Mario Prado finished his residency i Neurology at Philippine General Hospital in Manila before pursuing his training in Neurophysiology in Chiba University Hospital under the guidance of Professors Kuwabara, Shibuya and Misawa. There, he was exposed to different cases and research about peripheral nervous system disorders, especially motor neuron diseases. In the Philippines, he established the Motor Neuron Disease-Philippines, a non-governmental patient support group in 2021 while taking his post graduate course in Biostatistics to improve his research skills. Currently, he is an Associate Professor in the University of the Philippines and has published numerous papers in respected journals.
Matthew KIERNAN
Australia
Matthew KIERNAN
Chair, World Federation of Neurology ALS/MND Specialty Group | Founding President, the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS)
University of Sydney
Professor Matthew Kiernan is the Bushell Chair of Neurology at the University of Sydney and Co-Director of the Brain and Mind Centre. He is Chair of the World Federation of Neurology ALS/MND Specialty Group and established the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS). He is President of the Brain Foundation and Editor Emeritus of the Journal of Neurology, Neurosurgery & Psychiatry.
Melinda S. KAVANAUGH
United States
Melinda S. KAVANAUGH
Professor, Social Work
University of Wisconsin – Milwaukee
Dr. Kavanaugh is a Professor of Social Work at the Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, and a Licensed Clinical Social Worker (LCSW) in Neurology. Dr. Kavanaugh’s clinical experience informed her focus on clinical care and caregiving research, focusing on children, youth and college students as caregivers. She has conducted numerous U.S. and international research funded by the National Institutes for Health (NIH), Administration on Community Living (ACL), and the ALS Association. Dr. Kavanaugh’s research has informed her evidence-based intervention for young carers, YCare, a multidisciplinary youth caregiving skills and support protocol for young carers in ALS, cancer, Alzheimer’s disease and Autism across the United States and South Africa. She has presented her work both nationally and internationally, and has written several books for children, young adults and families living with illness, including a graphic novel for young carers which has been translated into German, French, Dutch, Spanish, Sesotho and isiZulu.
Merit CUDKOWICZ
United States
Merit CUDKOWICZ
Neurologist | Clinical Researcher
Harvard Medical School
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.
Mieko OGINO
Neurologist | Board Certified Home Care Physician
International University of Health and Welfare
Specialty: Intractable Neurological Diseases, als, Neuro Palliative Care
Professor Mieko Ogino MD,PhD,MMA is board certified Neurologist and board certified home care physician. She had been a post-doctoral research fellow at Colombia University in USA for 4 years, was awarded a PhD degree from Kitasato University 1994, and received the Master of Medical Administration from Tokyo Medical and Dental University 2008. She also finished the course of Center for Biomedical Ethics and Law (CBEL) in Tokyo University 2005 and became a specialist in clinical ethics. She is the opinion leader about palliative care for non-cancer patients, especially neurological diseases. She is a director of various academic societies and also a member of several national associations.
Mingsheng LIU
Professor in Neurology & EMG Doctor
Peking Union Medical College Hospital
Specialty: MND,EMG & Nerve Ultrasound
Dr. Mingsheng Liu is Prof in neurology and EMG Dr. of Peking union Medical College Hospital. He has been focusing on clinical research of motor neuron disease and peripheral neuropathy, including EMG and peripheral nerve ultrasound, clinical trial on ALS. He is the vice chairman of Chinese Society of Neuromuscular Disease, editorial board member of Clinical Neurophysiology Practice.
Naoki ATSUTA
Aichi Medical University School Of Medicine
Dr. Naoki Atsuta graduated from Nagoya University School of Medicine in 1996, became a Neurologist after clinical training, received his degree from Nagoya University Graduate School of Medicine, and served as the Ward Chief of Neurology at Nagoya University Hospital from 2009 to 2020. Since November 2020, he has been an Associate Professor at Department of Neurology, Aichi Medical University. He is a member of the ALS Clinical Guidelines Committee of Japanese Society of Neurology. From 2005 to the present, he has been involved in the establishment, operation, and research of JaCALS, a Japanese ALS patient registry, as its secretariat.
Nasheeda Saeed
Hospital Canselor Tuanku Muhriz
SPECIALTY: Internal Medcine / neurology
Clinical Fellow in neurology at the Faculty of Medicine, National University of Malaysia. She is from the Maldives. She holds a Doctor of Internal Medicine from the same institution and previously served as an internist in her homeland. Driven by her passion for neurology, she returned to Malaysia to pursue a neurology fellowship. Her mission is to leverage her training to establish much-needed holistic neurology care in the Maldives, where such expertise and services are scarce.
Nens VAN ALFEN
Netherlands
Nens VAN ALFEN
Director, Radboudumc Clinical Neurophysiology Laboratory
Radboud University Medical Center
Specilaty: Neurology & Clinical Neurophysiology
Nens van Alfen, MD PhD, is a Full Professor of Clinical Neurophysiology from the Radboud university medical center in Nijmegen, The Netherlands. Her areas of expertise include neuromuscular ultrasound, peripheral nerve pathology, brachial plexus neuropathies, and electrodiagnosis of neuromuscular disorders. She is the director of the Radboudumc Clinical Neurophysiology laboratory, that performs 1400+ nerve and muscle ultrasound studies yearly, and receives visiting clinicians from all over the world for short training programs in neuromuscular ultrasonography. Prof. van Alfen’s current focus is on advancing muscle ultrasound and developing an international teaching and quality program for neuromuscular ultrasound.
Nortina SHAHRIZAILA
Malaysia
Nortina SHAHRIZAILA
Dr Nortina Shahrizaila graduated from University of Nottingham Medical School, UK in 1997. She went on to complete her general medical training, specialist neurology training and doctorate degree in the UK before returning to Malaysia in 2009. As part of her specialist neurology and neurophysiology training, she worked at tertiary neurology centres including Queens Medical Centre, Nottingham and the National Hospital for Neurology and Neurosurgery, Queen Square, London. She is currently employed as Consultant Neurologist at University Malaya Medical Centre as well as Professor of Neurology at University of Malaya. She has subspecialty clinical and research interests in the field of peripheral neuropathies, motor neurone disease/amyotrophic lateral sclerosis and peripheral neurophysiology.
She is the current Secretary of the International Federation of Clinical Neurophysiology (IFCN) and Associate Editor of Clinical Neurophysiology Practice. She was previously co-Chair of the IFCN Education Committee, member of the Education Committee and Inflammatory Neuropathy Consortium of the Peripheral Nerve Society, and chair of the Clinical Neurophysiology Section of the Malaysian Society of Neurosciences.
Osamu KANO
Chairperson, of the Department of Neurology
Toho University, Faculty of Medicine
Dr. Kano is currently a Professor and Chairperson of the Department of Neurology, Toho University Faculty of Medicine. He completed his medical degree and PhD in Neurology at Toho University. He has been a postdoctoral researcher in Houston Methodist Hospital under Professor Stanley Appel. He focuses on the identification of biomarkers from peripheral blood in ALS patients to promote future ALS clinical trials. In 2020, his ALS clinic became the first site in Asia to join NEALS, and through NEALS, he aims to eliminate the ALS drug lag and drug loss in Japan and other Asian countries.
Paul TALMAN
Deakin University-University Hospital Geelong
Specialty: Neurology
Paul Talman completed a Bachelor of Science followed by medical training as a specialist neurologist and completing a PhD in Developmental Neurobiology at the Walter and Eliza Hall Institute of Medical Research in Melbourne Victoria. He is Director of Neurosciences of University Hospital Geelong, In 1992 he began working with Dr Susan Mathers as a clinical neurologist specialising in MND. In 2004 Paul Talman initiated the Australian MND Registry bringing together the leading clinical neurologists from around Australia to design and build a national registry for MND. This group developed a web-based data collection system which registered and followed over 2,500 MND patients and published on disease phenotypes and key stages in disease progression and survival. He has been the clinical lead in reengineering the initial web-based national clinical registry for MND in Australia , the MiNDAUS registry. The MiNDAUS registry collects clinical, and patient entered data from 12 MND specialist clinics in Australia and shares data with the Sporadic ALS Australia Systems Genomic Consortium.
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Phyu-Phyu LAY
Yangon General Hospital, University Of Medicine 1
Specialty: Neurology
She is a Professor/Head and Senior Consultant Neurologist of Department of Neurology, Yangon General Hospital, University of Medicine1, Yangon.
She received her MBBS (Ygn) in 1987,M. Med. Sc (Internal Medicine) in 1997,Dr.Med. Sc (Neurology) in 2007, Dip. Med. Ed in 2018, Fellowships of the Royal College of Physicians: F.R.C.P (Edin) in 2016, F.RC.P ( Glasg) in 2020, F.RC.P( London) in 2021.
She is the President of the Myanmar Neurological Society and the Myanmar Society for the Study of Pain and a member of The Pan-Asian Consortium for Treatment and Research in ALS
since 2019.
Premana PREMADI
Indonesia
Premana PREMADI
Indonesia ALS Foundation
I am a professor of astrophysics at Institute Teknologi Bandung, Indonesia. I learned about MND as a patient when I was diagnosed with it in 2011. In form of a blog, I initiated a body of information on ALS/MND in Indonesian language. In 2015 I co-founded Indonesia ALS Foundation to gather data of MND patients in Indonesia and construct a communication network of support between healthcare professionals relevant to MND, the patients, and their families. We also learn from regional networks and join Indonesian communities of persons with rare disease and/or disabilities to gain support from Indonesian people and government.
Rabani REMLI
Universiti Kebangsaan Malaysia
Dr Rabani Remli is an Associate Professor at the Department of Medicine, Faculty of Medicine National University of Malaysia. She is also a Consultant Physician and Neurologist at the Hospital Canselor Tuanku Muhriz, Kuala Lumpur. Dr Rabani received her medical degree from University of Sheffield , United Kingdom and completed her Doctor of internal medicine training at the National University of Malaysia. She was awarded a certificate of completion in Neurology Training in 2014 by the National Neurology Board, Malaysia.Her main interest is in the field of neuromuscular and neuroimmunology disorders. She is currently served as Vice President of Malaysian society of neurosciences, Chair of Clinical Neurophysiology and Neuromuscular council in Malaysia Society of Neurosciences and a committee member of Therapeutics Plasma Exchange Task Force Group. She is the author and co-author of peer-reviewed articles published in local and international journals including Mulitple sclerosis, Clinical Neurophysiology and Neurology Asia.
Ramesh Narayanan
Australia
Ramesh Narayanan
ANZAC Research Institute-Sydney Local Health District
Specialty: In Vivo Models, Neurodegeneration, Cell Biology
Dr Ramesh Narayanan completed his PhD thesis on MND at the Queensland Brain Institute. Following this, he worked with CRC for People Living with Autism Spectrum Disorders to develop cell models for studying Autism. For his second postdoctoral fellowship, Dr Narayanan utilized Caenorhabditis elegans for studying nervous system function and disease. In 2018, Dr Narayanan was recruited to ANZAC Research Institute to head the C. elegans program within the Neurobiology group. He is primarily involved in developing new C. elegans models for studying neurodegeneration. In addition, he utilizes C. elegans for drug development and for validating nanotechnological drug delivery systems.
Raymond ROSALES
Philippines
Raymond ROSALES
University of Santo Tomas
Specialty: Neurology
Raymond Anthony Lotilla Rosales is a University of Santo Tomas (UST) Faculty of Medicine and Surgery Neuroscience Professor and Academic Researcher. He holds a PhD in Neuroscience from the Kagoshima University Graduate School of Medicine, through tandem Scholarship Grants from the Japanese Ministry of Education and Welfare, as well as the Japan Society for the Promotion of Science. He did subspecialty stints in neuromuscular disorders and movement disorders from Japan and USA. He is also former President of the Philippine Neurological Association, the Movement Disorders Society of the Philippines, Philippine Society of Neuro-Rehabilitation and the Asian and Oceanian Myology Center. He currently chairs International Parkinson’s Disease and Movement Disorders Society, Asian and Oceanian Section. Professor Rosales has >200 published researches and various Editorial Board Membership of peer-reviewed journals. He has received various UST Rector’s Research and International Publication Awards. He is currently Chair of Metropolitan Medical Center Department of Neuroscience & Brainhealth and an active staff of Clinical Neurophysiology and Movement Disorders of St. Luke’s Medical Center.
Saiful Effendi SYAFRUDDIN
Malaysia
Saiful Effendi SYAFRUDDIN
Senior Lecturer & Coordinator of Research
Universiti Kebangsaan Malaysia
Saiful Effendi Syafruddin is a Senior Lecturer and Coordinator of Research at the UKM Medical Molecular Biology Institute. He was previously trained in the field of cancer genetics and molecular biology at the University of Cambridge and University of Pennsylvania. By utilizing various advanced laboratory techniques like the CRISPR/Cas9 gene editing, his research interest revolves around understanding genetics and epigenetics determinants of cancer progression, specifically in kidney cancer. Several of his kidney cancer-related research have been published in Nature, Cancer Discovery, and Nature Communication.
Sakinah SABIRIN
University of Malaya
Specialty: Rehabilitation Medicine
Sakinah graduated from Trinity College Dublin, University of Dublin in 2014. Her interest in Rehabilitation Medicine was ignited during undergraduate years and further flourished while working in are search project conducted by the University Malaya Medical Centre Department of Rehabilitation Medicine. Her professional working experience includes Geriatric and Post-stroke Rehabilitation. Subsequently, she successfully completed her training as a Rehabilitation Physician in 2021. Her clinical and research focus is on Rehabilitation of Neurological diseases, with particular emphasis on but not limited to Motor Neuron Disease, stroke, demyelinating diseases, and polyneuropathies.
Sanggon LEE
Chung-Ang University Gwangmyeong Hospital
Specialty: Neurology
Education
2010 M.D., Hanyang University, College of Medicine, Seoul, Korea.
2019 MSc., Hanyang University, Graduate School, Seoul, Korea.
2020-recent Ph.D. course, Hanyang University, Graduate School, Seoul, Korea.
Positions and Employment
2018-2020 Instructor, Neurology, Hanyang University Hospital
2020-2022 Clinically assistant professor, Neurology, Hanyang University Hospital
2022-2023 Clinically assistant professor, Neurology, Chung-Ang University Gwangmyeong Hospital
Sanihah ABDUL HALIM
Malaysia
Sanihah ABDUL HALIM
Universiti Sains Malaysia
Specialty: Neurology
Dr. Sanihah Abdul Halim is a senior lecturer and consultant neurologist at Universiti Sains Malaysia (USM), Malaysia. Her works include the assessment and management of reperfusion therapy in stroke, pre-epilepsy surgery evaluation, deep brain stimulation evaluation & programming, botulinum toxin injection for movement disorders, and clinical neurophysiology. She teaches neurology to both undergraduate and postgraduate students at USM. Her research includes stroke, epilepsy, and Parkinson’s disease. She is currently an Assistant Secretary of the Malaysian Society of Neurosciences (MSN) and an Executive Committee Member of the Clinical Neurophysiology and Neuromuscular Section (CNNS) of MSN.
Sanjeev NANDEDKAR
United States
Sanjeev NANDEDKAR
Sanjeev D Nandedkar, Ph.D.
Sanjeev is a biomedical engineer with interest in instrumentation, signal analysis, computer simulations, and quantitative analysis in electrodiagnostic studies. He has published over 100 scientific articles in medical and engineering journals and contributed 12 chapters in textbooks. He also edits the ‘EMG on DVD’ series (now in streaming format). He has conducted workshops on EMG, nerve conduction and quantitative methods in over 25 different countries. He works for Natus Neuro where he helps design, development, testing and training for the electromyography systems. He is also an Adjunct Professor of Neurology at Medical College of Wisconsin.
Sara FELDMAN
United States
Sara FELDMAN
MDA/ALS CENTER OF HOPE AT TEMPLE UNIVERSITY
Specialty: Physical Therapy And Assistive Technology
Sara Feldman, PT, DPT, ATP is the Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope at Temple University Lewis Katz School of Medicine. She has been the Physical Therapist at the ALS center since 1994 and is involved in clinical care, clinical trials and the use of assistive technology. She is a co-founder of the Northeast ALS Consortium (NEALS) Physical Therapy Committee and served as the Clinical Evaluator representative on the NEALS Executive Committee from 2013 to 2018. She served on the Board of Directors of the International Alliance of ALS/MND Associations from 2013-2019 and co-chairs the Allied Professionals Forum. In 2018, she received the inaugural International Allied Health Professional Award. She looks forward to the day there is a cure for ALS, but until that time, will continue to be an advocate for better care.
Sarah BENNETT
FightMND
Speciality: Research Coordinator
Dr Sarah Bennett is the Research Coordinator at FightMND. Dr Bennett obtained her PhD in cancer biochemistry at Monash University, Australia, in 2013, and was supported by Cancer Council Victoria and NHMRC Early Career Fellowships throughout her postdoctoral career. Dr Bennett joined FightMND in 2022, and in her role as Research Coordinator helps to deliver the ~$85M in research funding FightMND has committed since 2015. FightMND has many targeted grant schemes supporting research into basic, translational and clinical MND research. Some schemes are open to international researchers, as FightMND seeks to foster international collaborations to accelerate research discoveries.
Satoshi KUWABARA
Chiba University Hospital
Specialty: Clinical Neurophysiology, ALS, GBS/CIDP
Professor Kuwabara is the Chair of Neurology at Chiba University Hospital (since 2008). He is a clinical neurologist, Deputy Editor of the Journal of Neurology, Neurosurgery and Psychiatry (2010-2022), and Chief Reviewer of Cochrane Database Systematic Review; “Treatment for POEMS syndrome” (since 2008). He graduated from Chiba university in 1984 (MD), and studied clinical neurophysiology under Prof. David Burke at University of New South Wales (1999-2000). He has extensively studied clinical neurophysiology and neuroimmunology through the pathophysiology and treatment of neuromuscular disease such as ALS, Guillain-Barre syndrome, CIDP, and POEMS syndrome. He has published 650 (English) and 470 (Japanese) peer reviewed articles.
Seung-Hyun KIM
South Korea
Seung-Hyun KIM
Hanyang University Hospital
Dr. Seung H Kim is currently a neurology professor, director of the ALS clinic, and Korean NIH-sponsored Stem Cell Therapy Center at Hanyang Univ. Hospital, Seoul. And, He serves as President of the Korean Society of Neuromuscular Disorder and the Korean Society of ALS.
A therapeutic strategy using autologous Bone Marrow that originated Mesenchymal Stem Cell Therapy for ALS was approved as an orphan drug in the Korean NIH research project. He put autologous stem cell therapy into clinical practice to treat ALS and is now conducting translational research in the field of neurodegenerative diseases for the development of stratified and precision medicine based on the unique genetic background of the Korean and Asian populations.
Sheila AGUSTINI
Indonesia
Sheila AGUSTINI
Vice Chair of Indonesia ALS Foundation
Indonesia ALS Foundation
Specialty: Neurophysiology
Dr. Sheila Agustini, a graduate from Department of Neurology (University of Indonesia), a fellow in Neurophysiology, currently serves as the Vice Chair of Indonesia ALS Foundation. She has been consistent and actively supporting the ALS community since 2015. Her dedicated work mainly towards promoting ALS awareness in Indonesia and sharing knowledge with the community and medical professionals on how to provide care to achieve quality of life. She has produced and directed educational videos and published practical care book for patients and family.
Shuo-Chien LING
Singapore
Shuo-Chien LING
National University of Singapore
Specialty: Mechanisms Underlying ALS and FTD
After obtained a BS and MSc at the National Tsing-Hua University (Taiwan), I completed my Ph.D. at the Neuroscience program at the University of Illinois at Urbana-Champaign (USA) under Professors William Greenough and Vladimir Gelfand. After a short postdoc at Northwestern University, I moved to University of California, San Diego (USA) to work with Professor Don Cleveland. In 2013, I joined the Department of Physiology as an Assistant Professor at the National University of Singapore, where I was promoted to tenured Associate Professor at January 2022. My laboratory focuses on the mechanisms underlying age-related neurodegenerative diseases, in particular, amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD).
Shyuan NGO
Group Leader, University of Queensland
The University of Queensland
A/Prof Ngo is a Group Leader at the University of Queensland. She leads a research program that aims to define the contribution of altered metabolic homeostasis to ALS pathophysiology and pathobiology. Her research integrates studies in ALS patients with studies in human-derived cell models (including stem cell-derived neurons, and human primary myosatellite cells and myotubes) and mouse models of ALS. Projects aim to decipher the molecular drivers of ALS, and identify therapeutic strategies for ALS. The translational nature of her research has led to the expediting of therapeutics into clinical trials
Soo-Chin CHAN
University of Malaya
Specialty: Rehabilitation Physician
Dr. Chan Soo Chin graduated from International Medical University in 2007 and completed her postgraduate training in rehabilitation medicine in University of Malaya (UM). She had served in various hospitals in Ministry of Health before working as a lecturer in UM. She is dedicated in teaching, research and postgraduate supervision. Her special interests include neuromedical, motor neuron diseases, musculoskeletal and pulmonary rehabilitation. Dr. Chan has been invited by World Health Organization (WHO) to become the expert panel in developing the rehabilitation framework for chronic obstructive pulmonary disease (COPD). She is actively involved in pulmonary rehabilitation research with partnership from University of Edinburgh and collaboration from four Asian countries, namely Bangladesh, India, Malaysia and Pakistan. She is an active member of International Society of Physical Rehabilitation Medicine (ISPRM) and the former treasurer of Malaysian Association of Rehabilitation Physicians (MARP).
Stefanie Yan-Hung KAR
Malaysia
Stefanie Yan-Hung KAR
Hospital Tengku Ampuan Rahimah Klang (HTAR)
Specialty: Neurology/ Neuromuscular Disease
I graduated from Royal College of Surgeons in Ireland/ Penang Medical College in 2008. Since then, I passed my MRCP (UK) in 2012 and joined Hospital Sungai Buloh from 2012-2016 as a physician before joining the Neurology training with MoH in 2017. I then went to King’s College Hospital under the supervision of Dr Robert Hadden from 2019-2020 for my Neuromuscular fellowship. I am now working in HTAR, Klang.
Steve Chen-Fei NG
Malaysia
Steve Chen-Fei NG
Universiti Kebangsaan Malaysia
Dr Steve Ng Chen Fei is a Consultant Neurologist at the Universiti Kebangsaan Malaysia Medical Centre. He completed his neurology specialty training at the Universiti Kebangsaan Malaysia and Fellowship of Clinical Neurophysiology and Neuromuscular Disorders at the National Hospital for Neurology and Neurosurgery, Queen Square, London. He is a fellow of the Royal College of Physicians and Surgeons of Glasgow and the American Association of Neuromuscular & Electrodiagnostic Medicine.
Steve VUCIC
The University of Sydney
Specialty: Neurology/ALS
Professor Vucic is the Northcott Chair of Neurology and Director of the Brain and Nerve Research Centre (The University of Sydney). Professor Vucics’ research interest has been in the understanding of ALS pathogenesis along with development of diagnostic and prognostic biomarkers. Additionally, he has been extensively involved in developing novel ALS clinical trials in Australia, (through the MindAus initiative), heading the first in class trial of nanocrystalline gold (Cnm-Au8) and being the sole Australian site for the VALOR study. Professor Vucic has published > 350 manuscripts in highly prestigious international journals. For his research, Professor Vucic has been awarded numerous international and national accolades including the Erica Susman Prize (Royal Australasian College of Physicians for outstanding and lasting contribution to the field of internal medicine) and Gottschalk medal - Awarded by the Australian Academy of Science (2016). Professor Vucic was awarded a Doctor of Science (DSc) by the University of New South Wales in recognition of significant scholarly work in ALS and was elected as a Fellow of the Australian Academy of Health and Medical Sciences in 2020.
Tu Quoc Le TUAN
Head of the Neurology Department
TrieuAn hospital
Specialty: Myasthenia Gravis & ALS
Dr. Tuan graduated with his M.D. training at Hue medical university (1990) and then specialized in Neurology (1991-1992) and later in Clinical Neurophysiology (1997). He trained at Neurolab at Singapore General Hospital (2004) and the Clinical neurophysiological department at UCLA (2008). Dr. Tuan has experienced more than 25 years of experience as a neurologist and clinical neurologist. He got his Ph.D. training at Military Medical University (2019). In Vietnam, Dr.Tuan is an expert on Myasthenia Gravis and ALS. Dr. Tuan is the current president of the Vietnam Association of Electrodiagnosis and Neuromuscular diseases (VANEM).
Tze-Yang CHUNG
University of Malaya
Wanjun NG
Queen Elizabeth Hospital
Specialty: Palliative Medicine
Dr Ng graduated from St Bartholomew & the Royal London School of Medicine, Queen Mary University of London, United Kingdom in year 2009. She trained locally as a general physician, before completing her training as a palliative care physician in Malaysia and Singapore year 2021. She is currently heading the palliative care unit in Queen Elizabeth Hospital, Kota Kinabalu, Sabah. She works closely with the MND team in University of Malaya in managing the patients diagnosed with MND in Kota Kinabalu. She also has strong passion in advance care planning, where she set up the ACP programme at hospital level and continues to work towards state and national level of ACP development.
Win-Min THIT
Yangon General Hospital
Specialty: Neurologist
Professor Win Min Thit is a Senior Consultant Neurologist at Asia Royal Hospital and retired Professor and Head of Department of Neurology, Yangon General Hospital, Myanmar. She is the former president of Myanmar Neurological and Pain Society.
She graduated on 1985 and accomplished her neurology specialist training at 2001 from University College of London, Queen Square, UK. She became neurology consultant since 1999. She is also a fellow of Royal College of Physicians of London, Edinburgh & Glasgow, UK.
She is an executive board member of Asian Oceanian session of international Movement Disorder Society, Pan-Asian Consortium for Treatment and Research in ALS (PACTALS) and Asia Pacific Stroke Organization (APSO).
As her great achievement, she has established acute stroke Thrombolysis and Therapeutic Plasma Exchange in Myanmar. Her special areas of interest are movement disorders, dementia and motor neuron diseases.
Yi-Chung LEE
Director, Division of Peripheral Nerve System Disorders, Neurological Institute
Taipei Veterans General Hospital
Specialty: Neurology
Prof. Yi-Chung Lee is currently the director of Division of Peripheral Nerve System Disorders, Neurological Institute, Taipei Veterans General Hospital, Taiwan. He is also a professor of Neurology, Yang Ming Chao Tung University. His clinical and research efforts have focused on the genetic diagnosis, molecular mechanism, epidemiology and management of several adult-onset inherited neurodegenerative diseases, including ALS. His group has delineated the genetic landscapes of ALS, CMT, and CADASIL in Taiwan as well as identified several novel disease genes, including KCND3 for SCA, GNB4 for CMT, and WARS1 for distal hereditary motor neuropathy.
Zhangyu ZOU
Fujian Medical University Union Hospital
Specialty: Neurology
Member of the EMG and Clinical Neurophysiology Group of the Neurology Branch of the Chinese Medical Association. Secretary of the ALS Collaboration of the Neurology Branch of the Chinese Medical Association. Award winner of the AANEM 59th Annual Meeting President’s Research Initiative Award, and International Federation of Clinical Neurophysiology Research Scholarship in 2015. I have been engaged in clinical, electrophysiological, and basic research of ALS for more than 10 years. Currently I have three research projects of ALS funded by the National Natural Science Foundation of China.