The role of the International Alliance of ALS/MND Associations’ Research Directors Forum (RDF) includes coordinating global research interests; advising on topics to prioritize and where there are gaps in ALS/MND research; evaluating the impact of research funding on a global scale; and building a collaborative ALS/MND research network that aims to improve inclusion of underrepresented populations in research.
Chair of the RDF
Bec Sheean, PhD
Director
Bec Sheean, PhD, is the FightMND’s on funding translational research projects to bring potential treatments and clinical trials to MND patients in Australia. As Research Director, Sheean oversee the Research Grant schemes, which support pre-clinical and clinical MND research projects throughout Australia and internationally, as well as FightMND-funded Clinical Trials. Through her role, she liaises with researchers, clinicians, pharmaceutical companies, CRO’s and Government to develop large scale, collaborative MND research projects. In this role, she also co-ordinated the Programme and running of the FightMND Australasian MND Symposium.
Forum Members
Anna Ambrosini, PhD
Head of Research at Fondazione AriSLA
Anna Ambrosini has a PhD in Pharmacology and was an academic researcher in the field of neurodegeneration until 2000. Since 2001 she has been working at Fondazione Telethon, the main Italian funding agency for rare genetic diseases, where she is currently Head of Research. Since 2018, she has also been Head of Research at Fondazione AriSLA, the Italian agency supporting research on ALS, of which Fondazione Telethon is a founding partner.
With over 20 years of experience in research management, she has gained a deep understanding of the principles, needs and challenges of funding medical research and involving patient organizations in healthcare and research. In particular, she developed and coordinated clinical programs aimed at improving trial readiness and quality of life of people living with a neuromuscular disease. At international level, she has been a member of the Executive Board of the European NeuroMuscular Centre (NL) and of the Treat-NMD network of Neuromuscular Registries.
At AriSLA, she has coordinated the development of the Foundation’s current strategic plan, which is based on a closer interaction between basic scientists and clinicians and aims to address the unmet needs in basic and translational research to facilitate therapeutic development in ALS.
Raquel Barajas-Azpeleta, PhD
Head of Research Department, Luzón Foundation
Raquel Barajas-Azpeleta, PhD, is the Head of Research Department at Luzón Foundation in Madrid, Spain. One of the aims of Luzón Foundation is to promote research mainly by 1) funding basic and translational research projects in Spain focused on finding the cause of ALS, a biomarker for its diagnosis, and treatment that stops, or ideally, reverts ALS symptoms; 2) funding ALS clinical trials; 3) coordinating the Spanish Network of ALS Researchers; 4) organizing and participating in different conferences, and congresses around the world, among other activities. Raquel is a Biologist by training, completing her PhD in Neurobiology at the Stowers Institute for Medical Research in the USA. After her postdoctoral training at the Champalimaud Foundation in Portugal, she became the Head of Research Department at Luzón Foundation where she oversees the aforementioned activities, both nationally and at the international level. Through her role, she liaises with researchers, clinicians, pharmaceutical companies, CRO’s, as well as people living with ALS, and she is part of several ALS patient advisory boards.
Nicholas Cole, PhD
Head of Research, MND Association
Dr. Nicholas Cole completed his PhD at University of St. Andrews in Scotland, UK, before completing research postdocs in St. Andrews and Dundee, Scotland, and Sydney, Australia. Nick started began his own lab in the University of Sydney, modelling ALS/MND in zebrafish, before being helping to establish the MND Research Centre at Macquarie University in Sydney. Nick returned to the UK with his family and dog “Vegemite” to take up his position as Head of Research at the MND Association in 2018. Nick is a keen kite surfer and Guinness world record holder after his “kitethereef” MND fundraiser in 2015.
Kuldip Dave, PhD
Vice President, Research, The ALS Association
Dr. Kuldip Dave is Vice President of Research at The ALS Association. He is a former director of research programs at The Michael J. Fox Foundation for Parkinson’s Research, where he worked for 9 years developing and implementing the Foundation’s ambitious research vision in the biology of Parkinson’s. Dr. Dave received his undergraduate degree in biology from Rutgers University, and a Ph.D. in pharmacology and physiology from Drexel University College of Medicine and worked in biotech/pharma industry for 5 years prior to joining the non-profit philanthropy world.
Amy Easton, PhD
Director of Scientific Programs, Target ALS
Amy received her PhD in Neuroscience from Northwestern University and completed a postdoctoral fellowship at The Rockefeller University. She moved directly into industry in 2005, serving as a senior scientist at Bristol Myers Squibb. Her lab was responsible for generating in vivo PoC data, pk/pd data, and IND-enabling data packages for drug discovery programs developing treatments for Schizophrenia and Alzheimer’s disease. From there, Amy became Head of Translational Neuroscience at Genentech for 7 years, supporting all aspects of preclinical research for neurodegenerative disease programs including biomarker data generation. There, Amy served on multiple ALS programs and contributed significantly to the Neuroscience portfolio strategy, including spearheading entrée into RNA-directed therapeutic modalities. In November, 2022 Amy joined Target ALS as Sr. Director of Scientific Programs where she oversees funding opportunities, development of research tools and resources, and a Global Natural History Study in ALS.
Natalie Gauld, ONZM, PhD
Research Advisor and Best Practice Advocate, Motor Neurone Disease NZ
Natalie Gauld trained as a pharmacist and researcher with a PhD in General Practice. Collaborating with others, she has increased access to medicines and health services through pharmacy and led related research. In 2023, Natalie was awarded of Officer of the New Zealand Order of Merit (ONZM) for services to pharmacy and health.
Since being diagnosed with ALS in March 2022, her work on access to healthcare and research has continued. Natalie is working to increase research in New Zealand
including patient management research and clinical trials for new treatments and is leading a large questionnaire study of people with motor neurone disease, their families and bereaved. Natalie is a member of the Steering Group for the Motor Neurone Disease Patient Registry in New Zealand.
Extensive trail riding around New Zealand on a three-wheeler electric cycle has seen Natalie become an advocate for accessibility in the outdoors. She has honorary appointments at the University of Auckland.
Jane Haley, PhD
Director of Research, MND Scotland
Dr Jane Haley joined MND Scotland as Director of Research in late 2021 Prior to this role she was a neuroscience researcher for 19 years (with a focus on neuroplasticity and, more latterly, neurodegeneration) and then the scientific coordinator for Edinburgh Neuroscience for 15 years. Her role at MND Scotland involves managing their investment in research, which includes the MND-SMART platform trial.
Jessica Lee
Director of Research, My Name’5 Doddie Foundation
Jessica is Director of Research at the UK charity, My Name’5 Doddie Foundation. Prior to joining the Foundation, she worked in a number of research and innovation roles across government, charity and industry sectors. Her previous appointment was as Head of Patient Focused Partnerships at Medicines Discovery Catapult, where her team established international collaborations between patients, charities, pharmaceutical companies and biotechs to accelerate medicines discovery in areas of high unmet need. Jessica has a BSc in Cell Biology and a MPhil in Molecular Cancer Science.
Agnes Nishimura, PhD
Lecturer in Neuroscience, Queen Mary University of London
Dr. Nishimura is a lecturer in Neuroscience at Queen Mary University of London, UK. She graduated with a degree in Biological Sciences from the University of São Paulo, Brazil, and completed her PhD in human genetics at the same institution. During her PhD, she discovered a mutation in the vesicle-associated membrane protein-associated protein B (VAPB) gene that causes an atypical form of amyotrophic lateral sclerosis (ALS) in the Brazilian population. This mutation is the most common form of familial ALS in Southeast Brazil.
After completing her PhD, she moved to London to work with Prof. Christopher Shaw at King’s College London, where she contributed to the identification of another gene associated with ALS, the fused-in sarcoma (FUS) gene. Dr. Nishimura leads her research group at Queen Mary University of London (QMUL), investigating the disease mechanisms of ALS and Frontotemporal dementia utilising induced pluripotent stem cells (iPSCs) generated from ALS patients. In addition, she became the Scientific Advisor of the Paulo Gontijo Institute.
Kelsie Snow
Project Manager of the Alberta ALS Research Network
Kelsie Snow is the Project Manager of the Alberta ALS Research Network, a
collaboration between the ALS Society of Alberta and the province’s top ALS clinicians and researchers.
She stepped into ALS advocacy in June 2019, when her husband, Chris, was
diagnosed with familial ALS (SOD-1, A4V) and given 6-12 months to live. Instead, Chris enrolled in Phase 3 of the Valor trial for the ASO tofersen and lived for more than 4 years, making countless core memories with his family before he passed away in September 2023.
During Chris’ illness, the Snows chose to live out their lives publicly to raise ALS awareness and funds for research. Both trained journalists, Kelsie and Chris chronicled their journey on Kelsie’s blog, in her podcast and through numerous radio, television and newspaper stories and appearances. In partnership with Chris’ employer, the Calgary Flames, the Snows’ initiatives have raised more than $600,000 CAD for research on familial ALS at the University of Miami’s Miller School of Medicine in Florida, a world-first study testing the use of focused ultrasound to open the blood brain barrier for more effective delivery of ALS medications at Sunnybrook Health Sciences Centre in Toronto, and the Canada-wide data collection study CAPTURE ALS, headquartered in Alberta.
David Taylor, PhD
Vice President, Research & Strategic Partnerships at ALS Society of Canada
Dr. David Taylor has a degree in Biomedical Toxicology and graduated in 2006 with a PhD in Pathology from McGill University in Montreal. During his doctoral studies, David focused his efforts on understanding mechanisms that could lead to potential therapeutics in ALS and this has fueled his passion for the disease and the ALS/MND community for the past 17 years. He subsequently conducted six years of postdoctoral work at the EPFL in Lausanne, Switzerland and at the University of Toronto before joining ALS Canada in 2012.
David’s role at ALS Canada has been to oversee and advance the Canadian national research program. In this capacity, he provides strategic expertise, advice and direction to all stakeholders of the organization, manages the grants and awards program to deliver donor dollars effectively, identifies and pursues new sources of funding, facilitates new collaborations within and for the ALS research community, profiles Canadian researchers, and strives to communicate all ALS research in an accessible and understandable manner.
Fernando Vieira, MD
CEO and Chief Scientific Officer at the ALS Therapy Development Institute
Fernando Vieira is the CEO and Chief Scientific Officer at the ALS Therapy Development Institute (ALS TDI); a non-profit research institute dedicated to discovering and advancing effective treatments to slow, stop, or reverse amyotrophic lateral sclerosis (ALS). At ALS TDI, he leads a multidisciplinary team of scientists and research in their efforts to discover and develop effective treatments and biomarkers for amyotrophic lateral sclerosis (ALS). He has been focused on ALS research since 2001. His research findings – spanning basic discovery, preclinical discovery and optimization, clinical development, and translational ALS research have been widely cited. Specifically, he has focused on optimizing animal models for ALS preclinical pharmacology and drug screening. He has led or contributed to the identification and preclinical validation of four drugs that have been advanced into human clinical assessment and has been awarded multiple patents for those drugs. His teams have contributed important basic research findings to the study of genetic ALS, focusing on SOD1 mutation biology and C9orf72 mutation biology. Recently, he has led biomarker discovery efforts employing digital outcome measures and machine learning to assess ALS symptom severity. Dr. Vieira also serves on the Scientific Advisory Board of the ALS Investment Fund and was named to the 2024 Class of Henri Termeer Fellows. Dr. Vieira received his medical degree from Harvard Medical School and a bachelor’s degree in Biological Engineering from the University of Florida.
Paul Wright, PhD
Head of the MND Translational Challenge at LifeArc
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.
Pauline van der Velden
Pauline is eager to connect and exchange knowledge internationally to accelerate progress in ALS/MND research and care.
Staff Liaison
Martina de Majo, PhD
Scientific Director, International Alliance of ALS/MND Associations
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.