2025 Delegates

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 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. 

Since 2024, Matt Tilley has led FightMND as CEO, bringing his trademark energy, creativity and commitment to the fight against motor neurone disease (MND). Under his leadership, FightMND continues to grow as one of Australia’s most impactful and trusted charities, funding world-leading research and supporting people living with MND.
Before joining FightMND, Matt served as Chief Communications Officer at Foodbank Victoria, where he played a key role in shaping public engagement and advocacy. He also founded and led the Aussie Dollar Drop, a grassroots initiative supporting Australians experiencing homelessness.
Matt’s transition into the not-for-profit sector followed a celebrated two-decade career in commercial radio, where he became one of Australia’s most respected and recognisable voices on stations like FOX FM and Triple M. He has also contributed his expertise to several NFP boards, further demonstrating his long-standing dedication to community impact.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Ammar Al-Chalabi is Professor of Neurology and Complex Disease Genetics at King’s College London where he is Director of the King’s MND Centre. His research team works on finding the causes of ALS, potential treatments, and what might influence the way the disease manifests and progresses, particularly where this involves genes, environmental exposures, or lifestyle. He is co-Director of the UK MND Research Institute, Programme Chair of the International Symposium on ALS/MND and is an NIHR Senior Investigator. He has received multiple honours, including the Forbes Norris Award from the International Alliance of ALS/MND Associations, the Healey Center International Prize for Innovation in ALS, the Sheila Essey Award from the American Academy of Neurology, a Gold National Clinical Excellence Award and Fellowship of the UK Academy of Medical Sciences. He is a Visiting Fellow at the Perron Institute, and Lisa S Krivickas Visiting Professor at Massachusetts General Hospital.

Sarah manages the Cure Research Grants at FightMND, overseeing all aspects of pre-award for multiple research grants and fellowships. She comes from a medical research background, having completed a PhD in cancer biology in 2013. Following a number of international and local postdoctoral appointments in breast and prostate cancer, Sarah joined FightMND in 2022 to make a broader impact on research funding in Australia. In addition to managing pre-award at FightMND, Sarah also co-ordinates a Scientific Seminar Series and monitors progress of current projects.

David has recently joined FightMND as their Grants Manager. He has a long career in biomedical research and research management. He has a PhD and a Doctor of Science, the latter awarded for his international reputation in inflammatory and fibrotic properties of the growth factor, activin, and its binding protein, follistatin. He has published over 100 scientific articles and book chapters and has been awarded over $17 million in grant funding as a Chief Investigator. After running his own research group at Monash University, David transitioned to research management and has directed the La Trobe University research office, been Group Research Manager for Australia's largest private hospital network (Epworth HealthCare) and Research Director for a small biotech startup commercialising his intellectual property. Before joining FightMND, he was working at NHMRC, leading the Clinical Trials and Cohort Studies and Targeted Calls for Research grant schemes. David holds an Honorary Professor appointment with Deakin University and chairs on of Deakin's External Advisory Boards.