2025 Delegates

Dr Rebecca (Bec) Sheean

Director of Cure Research and Programs, FightMND

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Dr Bec Sheean is the Director of Research and Programs at FightMND, where she leads the strategic oversight of all funded programs, including critical research projects, initiatives, and events aimed at accelerating the fight against Motor Neurone Disease (MND).

With a PhD in neuroscience and a Graduate Certificate in Clinical Research from the University of Melbourne, Bec brings a strong scientific foundation and a passion for collaborative, translational research. She is a committed advocate for strategic partnerships and inclusive research practices, serving as Chair of the International Research Director Forum, a member of the International Alliance Scientific Advisory Committee, and Co-Chair of the MND Research Collective—a unique network uniting researchers and people with lived experience of MND.

Bec Daniher

Executive Director, Strategic Alliances, FightMND

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Bec Daniher is FightMND’s Executive Director, Strategic Alliances. and spokesperson, driving its mission to find effective treatments and a cure for motor neurone disease (MND). After representing Australia at the 2013 Rowing World Championships, Bec stepped away from rowing to support her father, Neale Daniher, after his MND diagnosis. Joining FightMND in 2016 as its first employee, she has been instrumental in the growth of its campaigns, including the Big Freeze, which raises over $20 million annually. Through her leadership and dedication, Bec continues to inspire hope and rally Australians in the fight against MND. 

Dr Gethin Thomas

Roundtable Advisory and Administrative Coordinator, FightMND

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Gethin has over 20 years of experience as a biomedical researcher in the musculoskeletal disease area, specialising in genomics and cell and animal models.He has published widely and secured almost $4M in research funding. Over the last 12 years in senior research leadership roles, he has directed a university Research Office, served as an Associate Dean of Research and was the Executive Director, Research for Motor Neurone Disease Australia, managing their research funding program as well as research strategy, partnerships and initiatives. His experience ranges across universities, medical research institutes, industry and for-purpose organisations. He has served on the boards of a number of organisations including the International Alliance of ALS/MND Associations. This broad experience across the spectrum of research environments and activities has enabled him to develop a fundamental understanding of research strategy and operations, and a deep appreciation of the challenges facing the sector.

Dr. David Taylor

Chief Scientific Officer at ALS Society of Canada.

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David Taylor is the Chief Scientific Officer at ALS Canada. In 2012, Dave left a postdoctoral position to join the organization, where he has the privilege of managing the national and global research portfolios, advocating for the needs of Canadians living with ALS, working closely with clinicians and industry to advance the clinical trial and treatment landscape for Canadians, interacting regularly with the ALS community to provide balanced, accessible information and supporting many initiatives outside of Canada with the hope of working towards a world free of ALS.

Prof Julie Atkin

Co-Director, MND Research Centre, Macquarie University

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Professor Julie Atkin is interested in the cellular and molecular mechanisms triggering neurodegeneration in ALS/MND.  From this her team is developing new therapeutic targets and biomarkers.  Professor Atkin has been working in the ALS/MND field for over 20 years, and prior to that worked in the biotech industry in both Australia and the UK.

Dr Angela Lily Genge

Director ALS center of excellence, McGill University

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For nearly 40 years I have been committed to improving the lives of ALS patients, working towards a making ALS a treatable disease. I am a clinical trialist, actively involved in drug development and clinicalt rial design for ALS molecules. Currently I am director of the ALS center of excellence at McGill University and director of clinical research for the McGill University Health Network.

Dr Lucie Bruijn

Therapeutic Area Biomarker Lead, Novartis

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I have worked in the neurodegenerative field for the past 30 years with a specific interest in developing therapies for these devastating disorders. I currently lead biomarker development for clinical studies in ALS, AD, PD and Huntington’s disease at Novartis. Combining my pharmacology background and prior academic research efforts in disease mechanisms and modelling, I continue my passion for academic and industry collaborations to further therapeutic developments. In my prior position at The ALS Association, I established the first translational research program for ALS, Translational Research Advancing Therapies for ALS (TREAT ALS). I established initiatives for drug development, clinical trials, biomarkers, assistive technology, precision medicine, large scale sequencing and analytics. This set the stage for many global resources to support new therapeutic approaches, including the development of antisense therapies for neurodegenerative disorders.

Dr Jeremy Shefner

Investigator, Barrow Neurological Institute

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Jeremy Shefner, MD, PhD, is Professor of Neurology at the Barrow Neurological Institute. He is co-founder and former co-chair of the Northeast ALS (NEALS) Clinical Trials Consortium, the largest ALS-dedicated group of its kind in the world. He continues to direct NEALS outcomes and clinical monitoring cores, currently involved in multiple clinical trials. His main research focus is the development of novel outcome measures for ALS trials.  
Dr. Shefner has published more than 250 chapters and papers in peer- reviewed journals and has served on multiple grant review panels. In 2014, Dr. Shefner received the Sheila Essey Award for ALS Research, the major award given annually by the ALS Association and the American Academy of Neurology. He was awarded the Sean M. Healey International Innovation Prize for ALS in 2022, and in 2023 received the Forbes Norris Award for ALS given by the International Alliance of ALSMND Associations.

A/Prof Emma Scotter

Lab Head, University of Auckland

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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. 

Mr Phil Camden

Chair of Lived Experience Research Advisory Panel

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Phil is Chair of the MND Collective Lived Experience Research Advisory Panel and possesses 12 years of lived experience, having received his MND diagnosis in early 2013.
Phil actively engages in many initiatives including administrator of the Australian MND group Facebook page, “Connect, Share, Support,” which has amassed 1,400 members. He is on the panel for The Australian MND Guidelines and The MND Australia Lived Experience Network Approval Panel. Phil is also on the Non-Invasive Ventilation Stakeholder Advisory Group, The Community of Practice for MND Care and is the Bairnsdale FightMND DIY Fundraiser Ambassador.

Prof Lezanne Ooi

Group Leader, University of Wollongong

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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.

Dr Manish Raisinghani

CEO, ALS USA

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As Chief Executive Officer of Target ALS, Manish drives forward the organization's mission of breaking down barriers to ALS research to find effective treatments. Manish has led the organization since its founding in 2013, growing Target ALS into the largest private funder of ALS research globally. With Manish's vision and leadership, Target ALS established the organization's landmark Innovation Ecosystem model. By eliminating barriers that traditionally limit scientific progress, the Innovation Ecosystem catapults the best ideas on ALS research across the drug discovery pipeline at an unprecedented pace.
Prior to Target ALS, Manish served in senior scientific and executive roles at Columbia University, Sigma-Aldrich, and Taconic Biosciences.
Manish earned his Ph.D. from Southern Illinois University and his Bachelor of Medicine, Bachelor of Surgery degree from the Seth G.S. Medical College and KEM Hospital in Mumbai, India.

A/Prof Mary-Louise Rogers

Principal Research Fellow, Flinders University

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I am a neuroscientist, who has specialised in researching motor neuron disease, since 2011, founding the MND & Neurotrophic Laboratory at  Flinders University, Australia. I obtained my PhD in 2003, before moving to Flinders University. Facilitating the development of effective treatments for motor neuron disease (MND), lies at the heart of our laboratories research, supported by funding from Australian and USA funding bodies. Our research team has developed global strategies for using urine as a source of biomarkers for monitoring motor neuron disease (MND)/ Amyotrophic Lateral Sclerosis (ALS) in clinical trials and describing how MND starts. For example, publishing a world-first urinary biomarker of MND progression called p75ECD in 2017 and urinary neopterin in 2022. In parallel, we are investigating endogenous retroviruses as contributors to MND/ ALS onset and progression. 

A/Prof Lyle Ostrow

ALS Clinician, Scientist, Chair - DOD/CDMRP ALS Research Programmatic Panel, Director - ALS Postmortem Core, Lewis Katz School of Medicine at Temple University

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Dr. Ostrow received his MD and PhD (Biophysics) from SUNY/Buffalo, followed by Neurology Residency and Neuromuscular Medicine Fellowship at Johns Hopkins University. He was faculty at Hopkins from 2010-22, becoming Director of the Neuromuscular Medicine Fellowship and Asst Director of Neuromuscular Pathology. Dr. Ostrow joined Temple University and the MDA/ALS Center of Hope in Philadelphia in 2022. He Directs the Temple ALS Postmortem Core, which combines de-identified clinical, pathological, & genomic data with autopsy tissues and slides - all made broadly available to ALS researchers. He is on the SAB for EverythingALS, the Board of Directors for the ALS Hope Foundation, and Chairs the Programmatic Panel of the DoD ALS Research Program (ALSRP), presently the largest dedicated annual funder of ALS therapeutic discovery and validation. He led ALSRP efforts to refine mechanisms to accelerate ALS therapy translation, emphasize biomarkers, and encourage open data and resource sharing.

Dr Nortina Shahrizaila

Professor of Neurology, Universiti Malaya

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Dr Nortina Shahrizaila graduated from University of Nottingham Medical School in 1997 and completed her neurology training and doctorate degree in England before returning to Malaysia in 2009. She is currently Professor of Neurology at Universiti Malaya in Kuala Lumpur. She has subspecialty clinical and research interests in the field of neuromuscular disorders, including motor neurone disease/amyotrophic lateral sclerosis (MND/ALS). She leads the multidisciplinary MND/ALS clinical and research team. She recently served as Secretary of the International Federation of Clinical Neurophysiology (2022-2024) and is the incoming President of the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS) 

Mrs Paula Trefiak

PALS & CALS Advisory Committee, International Alliance of ALS/MND Associations

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Paula Trefiak is a fierce MND Advocate from Canada redefining lived SOD1 MND experience thanks to Tofersen/QALSODY.
She is a NEALS CRLI graduate and ALS Canada CALI graduate. She currently serves as an advisor with lived MND experience with the International Alliance of ALS/MND Associations and ALS Canada's Scientific & Medical Advisory Committee.
Professionally, Paula is a Customer Care Facilitator with the Saskatchewan Workers' Compensation Board facilitating collaborative recovery and return to work programs for injured workers.

Mr Matthew Webb

Person with lived MND caregiving experience, International Alliance of ALS/MND Associations

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Matthew Webb is a MND Advocate and NEALS CRLI graduate from Canada who has lived caregiving experience supporting his wife, children, and in-laws affected by SOD1 since 2006.
Professionally, Matthew leads information systems development as a Client Technology Manager with Saskatchewan Telecommunications. He holds a Bachelor of Science majoring in Computer Science.

Dr Sheila Agustini

Medical Advisor (Former Vice Chair 2015-2024, Indonesia ALS Foundation

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Dr. Sheila Agustini is a Neurologist who has been actively volunteering with the ALS Indonesia Foundation since 2015. She has been contributing to community work from publishing free ALS care guide, creating numerous educational videos like practical home exercises, involved in organizing each PALS/CALS meeting in Indonesia and as a watercolor painter herself , Dr. Sheila initiated “Art For ALS”-a charity project where she donated her painting sales to support the Indonesia ALS Foundation. Dr. Sheila co-authored in the first national ALS guideline launched by the Indonesian Neurological Association and involved in various ALS workshops and seminars for healthcare profesionnals across the country and also a member of PACTALS (Pan Asia Consortium For The Treatment and Research of ALS). She has been consistent in her dedication to help the ALS community in Indonesia.

Mrs Janet Hough

Person with lived MND experience, PLWMND

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I have had MND since end of 2022, when I was still working as a paediatric physio. With a career spanning more than 40 years I have journeyed with children and families through their toughest times, with expertise in complex neurology and orthopaedics across all ages from newborns to young adults. I am using my years of experience to allow my MND journey to be the best it can be, while also reaching out to support PLwMND in the community. I am passionate about contributing in the MND research space.

Prof Adriano Chiò

Professor of Neurology, University of Turin

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Adriano Chiò is a neurologist based in Torino, Italy, Full Professor of Neurology and Director of the ALS Center at the University of Torino and the Città della Salute e della Scienza Hospital. He leads the ITALSGEN Consortium and is a founder member of ENCALS and TRICALS. His research focuses on ALS epidemiology, cognition, neuroimaging, and genetics. He is known for studies on ALS risk in soccer players, phenotypic heterogeneity, and the use of FDG-PET in diagnosis and prognosis. He contributed to the discovery of ALS genes including C9orf72, VCP, MATR3, and KIF5A. Author of over 550 peer-reviewed papers, he received the Sheila Essey Award (2015) and the Norris Award (2021).

Dr Natalie Gauld

Research Advisor and Best Practice Advocate, Motor Neurone Disease New Zealand

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A pharmacist with a PhD, Natalie is internationally recognised as a leader in implementation and research of widening access to medicines and healthcare through pharmacy. This has involved varied therapeutic areas including vaccination, contraception, erectile dysfunction, hepatitis C, gout, and Anti-D in pregnancy, in collaboration with others, and saw New Zealand become a world leader in services delivered in community pharmacy through reclassification of medicines. She has published over 40 research papers. In 2023, she was awarded Officer of the New Zealand Order of Merit for this work. Diagnosed with ALS in March 2022, she started work part-time for Motor Neurone Disease New Zealand in late 2023 as Research Advisor and Best Practice Advocate, and became a member of the Steering Group for the New Zealand MND Patient Registry. Natalie has recently led New Zealand's most comprehensive survey of people with MND, families and bereaved, collaborating with other researchers.

Dr Barry Werth

Vice Chair of LERAP, MND Australia

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Dr Werth is a pharmacist who has worked in the Australian pharmaceutical industry for over 40 years. He has a PhD in epidemiology/pharmacoepidemiology (University of Sydney), an honours degree in pharmacy (University of Queensland) and an MBA (Deakin University). His pharmaceutical industry experience has included general management, regulatory affairs, clinical research, new product development, marketing and sales. Since retiring from full-time work, he has worked as a medical editor, editing medical research manuscripts prior to publication, as well as an author of manuscripts and a university course book. He currently works part-time as a consultant to Australian and foreign pharmaceutical companies. He is Vice Chair of the Lived Experience Research Advisory Panel of MND Australia, Co-Deputy Chair of the Lived Experience Advisory Group and member of the Clinical and Content Advisory Group of the Australian MND Guideline, and a Research Affiliate of the University of Sydney.

Mr John Clark

Chief Operating Officer, Neurizon Therapeutics

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Over 20 years of pharmaceutical industry experience in phase I – IV clinical trials across numerous therapeutic areas and multiple geographical regions. Previously served as Senior Project Manager at a Global CRO, leading the Clinical Operations team and providing cross-functional oversight on a national CNS trial. Before that, I held various clinical operations leadership roles responsible for implementing clinical programs. A proven project management and stakeholder engagement record, with a thorough knowledge of ICH-GCP and regulatory requirements.

Ms Eleanor Ramsey

Australian Network Coordinator, ALLSTAR - Australian ALS Clinical Trials Network

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Eleanor manages the Australian network of ALS clinical trial units ALLSTAR. This is a collaborative group of specialised clinical trial units and researchers across Australia with a shared aim of providing more Australian patients with ALS the opportunity to participate in clinical trials by attracting more trials to Australia and discovering a cure for ALS. Eleanor has over 15 years experience managing and coordinating clinical trials in motor neurone disease in Australia both investigator-initiated grant sponsored trials and international pharma-sponsored trials.

Dr Martina de Majo

Scientific Director, International Alliance of ALS/MND Associations

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Martina de Majo, PhD, has extensive experience researching disease mechanisms of ALS/MND and Frontotemporal Dementia (FTD). Dr. de Majo earned her Bachelor’s degree in Biotechnology and Master’s degree in Pharmaceutical Biotechnology with honours from the Sapienza University of Rome (Italy). She then received her PhD in Clinical Neuroscience from King’s College London (UK) and completed her postdoctoral training at University of California, San Francisco (USA). In addition to her academic training, Dr. de Majo worked as a principal investigator in the industry sector, directing several National Institutes of Health projects around ALS/FTD disease in vitro modelling. She joined the Alliance as Scientific Director in 2024 and has been coordinating the Alliance research portfolio since.

A/Prof Shyuan Ngo

Group Leader, The University of Queensland

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Shyuan is a Group Leader at the Australian Institute for Bioengineering and Nanotechnology (UQ), Director of the UQ Centre for MND Research, and an Affiliate/Adjunct Academic at the Royal Brisbane & Women’s Hospital (RBWH) and Murdoch University. She received her PhD in Neuroscience in 2009, after which, she transitioned to the field of MND. She started her independent research group at UQ in 2015 and has built a translational research program that integrates studies in people living with MND with studies in human-derived cell models (stem cell-derived neurons and organoids, human muscle cells) and mouse models of MND to define the mechanisms that drive MND and to identify therapeutic strategies for the disease.

Prof Jeroen Pasterkamp

PI, Head of Department, Scientific director UMC Utrecht Brain Center

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Jeroen Pasterkamp is professor of Translational Neuroscience at University Medical Center Utrecht, The Netherlands. He uses a multidisciplinary research approach to study mechanisms underlying axonal development and disease, with an emphasis on ALS and advanced human in vitro modelling (iPSC, brain organoids, microfluidics). He is director of the MIND facility for brain iPSC and organoid research, and co-lead of the CPBT, a large-scale national center for advanced human in vitro modelling. Jeroen is head of the Departent of Translational Neuroscience, chair of the UMC Utrecht Brain Center and member of the European Academy, participates in different European consortia and serves on the different (inter)national scientific advisory boards.

Dr Jeffrey Rothstein

PI, Johns Hopkins University

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Dr. Jeffrey D. Rothstein, M.D., Ph.D. is the Director of the Brain Science Institute and Professor of Neurology and Neuroscience at Johns Hopkins University School of Medicine. In 2000, he founded the Robert Packard Center for ALS Research at Johns Hopkins, the first multi-institutional, multi-national collaborative academic organization devoted to understanding the causes of ALS and translating discoveries into new therapeutic approaches and coordinates ALS researchers worldwide. He founded and directs the Answer ALS Research Program which combines longitudinal clinical data and induced pluripotent stem (iPS) cell technology, generating comprehensive biological analytics for over 1,000 ALS patients. His research has identified foundational defects that cause ALS, including astrocyte dysfunction, excitotoxicity, oligodendroglial injury, and nuclear pore and transport defects. His work contributed to the FDA approval of riluzole. He is a member of the National Academy of Medicine.

Prof Dongsheng Fan

Director, Department of Neurology, Peking University Third Hospital

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Dongsheng Fan, a Professor of Neurology at Peking University and Director of the Department of Neurology at Peking University Third Hospital, has devoted his career to researching and developing treatments for amyotrophic lateral sclerosis (ALS). Dr. Fan and his team have made substantial contributions to ALS research, including establishing the largest follow-up database for ALS patients in China. Their ongoing efforts encompass clinical trials and genetic studies aimed at identifying novel genes associated with ALS in the Chinese population. Consequently, the Department of Neurology at Peking University Third Hospital has become a nationally recognized center for ALS research and clinical care in China.

Dr Rebecca San Gil

Lecturer of Neuroscience, The University of Sydney

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Dr. Rebecca San Gil is a lecturer and group leader in the Neuroscience theme at the School of Medical Sciences, University of Sydney, Australia. She was the inaugural FightMND Early Career Research Fellow and currently leads the NeuroMolecular Discovery Group. Her research focuses on understanding the molecular mechanisms driving neurodegenerative diseases, with a particular emphasis on motor neuron disease (MND) and frontotemporal dementia (FTD), while generating insights that are broadly relevant to other neurodegenerative disorders. Dr. San Gil earned her PhD from the University of Wollongong in 2018 and undertook research at University College London as an Endeavour Research Fellow. She subsequently conducted postdoctoral research at the Queensland Brain Institute, University of Queensland, where she developed expertise in functional genomics, including genome-wide CRISPR screening and multi-omics analyses of brain and spinal cord tissue.

Prof Leonard van den Berg

PI, UMC Utrecht

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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.

Ms Catherine Cummings

CEO, International Alliance of Als/MND Associations

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Cathy is the CEO 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. Cathy has a mission called the Bouquet Project that aims to reverse the statistic that people are 10 times more likley to complain than praise.

Prof Andrea Malaspina

Clinical Academic Lead - Consultant Neurologist, UCL Queen Square MND Centre, UK

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Professor Malaspina is Clinical-Academic Director of the UCL Queen Square MND Centre, Institute of Neurology, with over 20 years of experience in multidisciplinary care and research in MND and neuromuscular disorders. His main focus is on molecular mechanisms of neurodegeneration to identify novel biomarkers and therapeutic targets. He leads major UK-wide longitudinal biobanking projects and currently directs the ALS Biomarkers Study. He is a co-investigator and key contributor to international ALS studies, including CREaTE and Pre-fALS. His work on neuroinflammation and neuroaxonal degeneration has made him a leader in the ALS biomarker and clinical trial field. He pioneered assays for biomarkers such as neurofilaments, now central to trial design, and advanced proteomic techniques to study tissue-fluid molecular intersections. He received the 2023 Healey ALS Innovation Award and is a member of the MIROCALS consortium.

Dr Keith Mayl

Senior Medical Director, Argenx

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A physician-scientist in neurology with expertise in neurodegeneration, neuromuscular diseases and therapeutic development. Prior to joining industry, I completed a clinical academic fellowship in neurodegeneration with a focus on ALS and FTD under the mentorship of Prof Chris Shaw at King’s College London. I led several ALS clinical trials as an Investigator and undertook doctoral research focusing on developing gene therapy for ALS-FTD. In industry, as a Senior Medical Director working in Clinical Development, I focus my efforts on developing novel therapies for rare neurological diseases. I am passionate about ALS, neuroscience, drug development and patient advocacy.

Prof Paul Talman

Principle Investigator, Deakin University University Hospital Geelong

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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 3600 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 14 MND specialist clinics in Australia and shares data with the Sporadic ALS Australia Systems Genomic Consortium.

Dr Matthew Harms

Principal Investigator; Neurologist, Columbia; CinGen; ALL ALS

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Matthew Harms trained in Neurology at UC San Francisco and completed neuromuscular, neurophysiology and neurogenetic fellowship at Washington University St. Louis. His research interests are new gene discovery, variant interpretation and natural history studies of ALS, genetic ALS including asymptomatic gene carriers. He chairs ClinGen committees on ALS and is multi-PI of the ALL ALS and PREVENT ALS programs in the United States.

Prof Matthew Kiernan

Director and CEO, Neuroscience Research Australia

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Professor Matthew Kiernan is the Chief Executive Officer and Institute Director, Neuroscience Research Australia; Scientia Professor of Neuroscience at the University of New South Wales and Senior Staff Specialist in Neurology at South Eastern Sydney Local Health District. Professor Kiernan is Chair of the World Federation of Neurology Specialty Group in MND, Chair of the World Congress of Neurology and President of the Brain Foundation. Professor Kiernan is past President Australian & New Zealand Association of Neurologists; Editor Emeritus of the Journal of Neurology, Neurosurgery & Psychiatry (BMJ Publishers UK) and was Chair of MND Research Australia (2015-2019). In 2019 he was appointed as Member, Order of Australia. In 2024 he was elected Fellow of the Australian Academy of Science. Recent awards include Ramaciotti Medal for Excellence in Biomedical Research; Research Australia GSK Award for Research Excellence; and the American Academy of Neurology Sheila Essey Award.

Prof Robert Bowser

Chief Scientific Officer, Barrow Neurological Institute, USA

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Dr Paul Wright

Head of MND and Rare Dementias, LifeArc

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Paul Wright is Head of the MND Translational Challenge at LifeArc. He oversees LifeArc’s funding and science activities focused on MND, leading a portfolio of project and programs with collaborations across academia, biotech and pharma. Prior to this Paul was a drug discovery scientist at LifeArc and Novartis, predominantly leading programs in neuroscience and neurodegeneration. Paul was part of the Academy of Medical Sciences Future Leaders in Innovation, Enterprise and Research (FLIER) program. Paul completed a PhD in Neuroscience at the Institute of Psychiatry, King’s College London and post-doctoral training at the University of Massachusetts Medical School and Harvard Medical School, in which he developed systems to identify potential new treatments for MND.

Dr Nick Cole

Head of Research, MND Association, UK

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Nick is the Head of Research at the MND Association, Chair of the International Alliance Scientific Advisory Council, and member of the UK Clinical Studies Group. Nick has a leading role in research communications, the organisation of the annual International Symposium on MND/ALS and the MND associations flagship event for early career researchers (Encourage UK). Nick 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 began his own research group in the University of Sydney before moving his research program over the Sydney Harbour Bridge to co-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.

A/Prof Tina Soulis

Founder and Director, Alithia Life Sciences

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A career spanning over 30 years of working in the Australia healthcare (pharmaceuticals and devices), biotechnology, academic research, clinical research and management sectors in senior roles including: CEO of a Contract Research Organization, Director of a successful ASX200 company, VP of Clinical Strategy and Development with an innovative biotechnology company and now, Founder and Director of her own full-service capability clinical CRO.

Dr Ruben Eijk

Associate professor, University Medical Center Utrecht

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Ruben van Eijk is an MD and biostatistician appointed as Associate Professor at the University Medical Center Utrecht (UMCU), The Netherlands. He obtained his Ph.D. in neurology/biostatistics, entitled: “Optimizing the design and conduct of clinical trials for ALS”. He was a Visiting Scholar at the Center for Innovative Study Design and Department of Biomedical Data Sciences, Stanford University. His current research focusses on new statistical models to combine survival and longitudinal data, integration of real-world evidence into drug development, as well as developing new endpoints that addresses the multidimensional nature of ALS and differences in patient preference.

Prof Nalini Atchayaram

Professor and Lead, National Institute of Mental Health and Neuro Sciences

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I completed my MD in Neurology in 1994, at National Institute of Mental Health and Neuro Sciences(NIMHANS). Currently working as Professor and Neuromuscular specialist. I am actively involved in the clinical services of Neuromuscular disorders and Amyotrophic Lateral Sclerosis. I am pursuing research in neuromuscular disorders for last 2.5 decades and created a hospital based ALS registry of more than 5000 cases. We have completed genomic studies in 1000 samples of ALS. I have been actively involved in basic science research and clinical research in ALS for last 3 decades. I am involved in several on going project in various Neuromuscular disorders with national and International funding Agencies. Independently, I am a leader of the NMD clinic for last 20 years and thousands of patients have benefitted from this service and my leadership qualities of successfully running the multidisciplinary clinic. I also lead the ALS clinic at our institute and lead the Neuropalliative care for ALS.

Professor (Hon.) Mark Sullivan

Managing Director, Medicines Development for Global Health, Australia

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Clinical and regulatory scientist with comprehensive experience of the development of new medicines. Founder and MD of MDGH, a non-profit pharmaceutical company and the first not for profit organization to achieve US FDA approval of a novel medicine. Career highlights include over 30 years’ experience in product development - formerly worked at GSK R&D (London) and Gilead Sciences, Inc. (California). Has led global cross functional project teams, regulatory interactions, and has personally run and/or had responsibility for >100 clinical trials at all stages of development. Also, significant contributor to three other successful global registrational programs: 3TC for HIV, lamivudine and adefovir for chronic hepatitis B. Formerly, COO of Australia’s HIV vaccine design and development consortium and a HIV prevention microbicide program. Mark is an honorary Professor at UNSW, an Officer of the Order of Australia in 2022, 2019 VIC Australian of the Year.

Prof Anthony Akkari

Research Director, Perron Institute/Murdoch University

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Anthony Akkari, is the foundation Chair of Industrial Pharmacogenetics at Murdoch University, and co leads of the Motor Neurone Disease genetics and Therapeutics group who are based at the Perron Institute and Murdoch University. Anthony is also the Director of the Personalised Medicine Centre at Murdoch University. He is also the Chief Scientific Officer at Black Swan Pharmaceuticals, an Antisense Oligonucleotide therapeutics development company specialising in motor Neurone disease and broadly neurodegenerative diseases. Anthony has over 30 years research experience neuromuscular disease genetics, including 18 years of industry experience based in the USA in pharmacogenetics and personalised medicine. While in the USA Anthony worked at GlaxoSmithKline and Eli Lilly. Anthony undertook his postdoctoral training at Duke University, Department of Neurology in North Carolina where he remains an Adjunct Professor with active collaborations.

Prof Ammar Al-Chalabi

Professor of Neurology and Complex Disease Genetics, King's College London and UK MND Research Institute

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Professor Ammar Al-Chalabi is Director of the UK MND Research Institute. He is an NIHR Senior Investigator and is the MND lead at the NIHR Biomedical Research Centre at King’s College London. His research focusses on understanding the causes and modifiers of ALS/MND and identifying potential treatments. He chairs the International Symposium on ALS/MND, and is a Fellow of the Academy of Medical Sciences, and recipient of several international prizes including the Forbes Norris Award, the Healey Prize, and the Sheila Essey Award.

Dr Thomas Cunningham

Group Leader, UCL, UK

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Tom is a molecular biologist and mouse geneticist at University College London, UK. He is a programme leader and MRC Investigator at the UCL Institute of Prion Diseases / MRC Prion Unit with a focus on engineering and studying bespoke mouse models of neurodegeneration. He has a key interest in humanised mouse models of prion diseases and ALS/FTD, including probing disease mechanisms in genetic forms of neurodegeneration and preclinical therapeutic development. Tom studied Biology with Genetics Honours at Edinburgh University before gaining a PhD in Genetics at Newcastle University, UK. He conducted his postdoctoral training in developmental genetics at the Sanford Burnham Medical Discovery Unit, La Jolla, USA, before moving to MRC Harwell, UK in 2017 to investigate mouse models of neurodegeneration as senior investigator scientist. He joined UCL in 2022.

Dr Maria del Mar Amador

Clinician, Researcher, Pitié-Salpêtrière Hospital, France

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I am a Spanish neurologist working at the Paris ALS Reference Center at Pitié-Salpêtrière Hospital (France) since 2013. The Paris ALS Reference Center provides care for approximately 1,400 ALS patients and sees around 450 new cases each year. My main focus is the clinical care of ALS patients, with a particular interest in genetic forms of the disease. In addition to my clinical work, I am involved in research at the ALS basic science laboratory at the Paris Brain Institute. Since 2017, I have also led the dedicated consultation for individuals at risk of carrying pathogenic ALS-FTD variants within the neurogenetics department at Pitié-Salpêtrière. I have supported over 300 individuals through the genetic testing process and currently follow around 120 asymptomatic carriers of ALS-FTD pathogenic variants. I have also participated in the SODA and VALOR clinical trials and enrolled all French participants in the ongoing ATLAS study.

A/Prof Cathy Blizzard

Brain Health Theme Leader, Principal Research Fellow, Menzies Insititute for Medical Research, Australia

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Associate Professor Cathy Blizzard is the lead of the Brain Health Theme at the Menzies Institute for Medical Research, University of Tasmania. Cathy is the Chair of the MND Discovery Research Collective, on the board of the MND Research Collective and member of the MND Australia Research Committee and the Australian MND Guideline Research and Policymaker Advisory Group. Cathy has secured over 10 million in competitive funding, with significant roles as lead Chief Investigator across NHMRC, ARC, MND Australia and FightMND projects. Her work integrates basic science with translational research, targeting synaptic dysfunction in neurodegeneration and accelerating pathways to therapeutic development.

Dr José Manuel Matamala

Congress attendee, University of Chile, Chile

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Dr. José Manuel Matamala holds a Doctor of Medicine (MD) degree from the University of Chile, where he completed his specialization in Neurology. He also obtained a Master’s degree in Neurological Electrodiagnostics from the University of Barcelona, Spain, and a PhD in Medicine from the University of Chile. He pursued postdoctoral training in Clinical Neurophysiology and Motor Neuron Disease (MND) at the Brain and Mind Centre, University of Sydney, Australia. Dr. Matamala is currently an Associate Professor of Neurology in the Department of Neurological Sciences at the University of Chile. He serves as Director of the Translational Neurology and Neurophysiology Laboratory (NODO Lab), and is a co-founder and active member of the Executive Committee of ELATAM. His research is dedicated to elucidating pathophysiological mechanisms and identifying novel biomarkers in neurological disorders, with a particular focus on MND and other neuromuscular diseases.

Prof Brad Turner

Lead of Neurodegeneration Research Area, Florey Institute, University of Melbourne, Australia

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Brad Turner is a Professor of Neuroscience at the University of Melbourne and Lead of the Neurodegeneration and Immunology Research Area, and MND Laboratory at the Florey Institute of Neuroscience and Mental Health. He is a molecular neurobiologist with a 20 year career in discovery and preclinical research in MND using patient stem cell-based, neural organoid and mouse models. His team generated the largest MND patient iPSC library in Australia for disease modeling and drug screening. His team’s discoveries have translated into 5 drugs in clinical trials for MND, including ambroxol

Ms Jane Milne

CEO, MND and Me Foundation, Australia

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Ms. Jane Milne joined The MND and Me Foundation in July 2018 and took over the role of CEO in February 2020. An experienced communicator, event manager and marketing professional, Jane was most recently the Community Development Officer at Lourdes Hill College in Brisbane where she managed an extensive fundraising, community engagement and outreach program. Prior to taking up this role at LHC, Jane managed the electorate office for a State MP which involved all forms of IMC, coordinating community events, media management and stakeholder engagement. Jane has extensive communications and fundraising experience as well as a wide range of event management experience including roles as State Architecture Awards Director and coordinator of a number of sporting events. Jane has a B.Bus in Integrated Marketing Communications and a proven reputation for both strategic planning and hands-on execution of events.

Dr Julia Morahan

Deputy CEO, MS Australia, Australia

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Dr Julia Morahan is the Deputy CEO for MS Australia and oversees strategic projects for the organisation with an international research focus. Julia has a Bachelor of Medical Science from the University of Sydney and a PhD in Neurology and Genetics undertaken at the Royal Prince Alfred Hospital in Sydney. Following her PhD, which investigated the neurodegenerative condition motor neuron disease (MND), Julia was funded by MND Australia to undertake a postdoctoral fellowship to look at genetic and environmental factors in the development of the disease. In 2009, Julia switched her focus to MS and became the first recipient of a joint MS Research Australia – MS UK Fellowship, to work at the University of Oxford which was supported by the Macquarie Group Foundation. Julia has worked in the NFP sector since 2012.

Dr Gerald Pfeffer

Associate Professor, University of Calgary, Canada

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Gerald Pfeffer is a clinician-researcher at the University of Calgary. His neurology specialist training was at University of British Columbia, and PhD in genetics at Newcastle University. His team's work in ALS primarily focuses on microbiome studies as part of an international clinical and basic research collaboration. He serves on the Scientific and Medical Advisory board of ALS Canada and is an executive committee member of Capture ALS.

Dr Jennifer Hollands

External Affairs Manger & Business Development Consultant, Cell Therapies Pty Ltd, Australia

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Dr Ginny Sargent

Knowledge translation, MND Australia

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Ginny joined MNDA in February 2025, bringing 30 years of experience in science communication, population health research, adult education, and evaluating government health promotion policies. Ginny is dedicated to making knowledge actionable and accessible and brings her expertise as an academic in population health research, knowledge exchange and translation, and fostering collaboration to improve health outcomes and inform policy.