The Research Directors Forum (RDF) brings together research leaders from ALS/MND organizations around the world to strengthen global collaboration and accelerate progress in ALS/MND research.
Forum members help identify research priorities, address gaps in knowledge, evaluate the impact of research funding, and promote a more coordinated, inclusive, and collaborative international research ecosystem.
Chair of the RDF
Jessica Lee
Director of Research, My Name’5 Doddie Foundation
Jessica Lee is Director of Research at the UK charity My Name’5 Doddie Foundation. Prior to joining the Foundation, she worked in a range of research and innovation roles across the government, charity, and industry sectors. Most recently, she served as Head of Patient Focused Partnerships at Medicines Discovery Catapult, where her team established international collaborations between patients, charities, pharmaceutical companies, and biotechnology organizations to accelerate medicines discovery in areas of high unmet need. Jessica holds a BSc in Cell Biology and an MPhil in Molecular Cancer Science.
Forum Members
Anna Ambrosini, PhD
Head of Research, Fondazione AriSLA
Anna Ambrosini holds a PhD in Pharmacology and worked as an academic researcher in neurodegeneration until 2000. Since 2001, she has worked at Fondazione Telethon, Italy’s leading funding agency for rare genetic diseases, where she is currently Head of Research. Since 2018, she has also served as Head of Research at Fondazione AriSLA, Italy’s national foundation supporting ALS research.
With more than 20 years of experience in research management, Anna has developed extensive expertise in research funding, patient engagement, and clinical program development. She has led initiatives to improve trial readiness and quality of life for people living with neuromuscular diseases and has served on the Executive Board of the European NeuroMuscular Centre and the Treat-NMD network of Neuromuscular Registries.
At AriSLA, Anna led the development of the Foundation’s current strategic plan, strengthening collaboration between basic scientists and clinicians to accelerate translational ALS research and therapeutic development.
Raquel Barajas-Azpeleta, PhD
Head of Research Department, Luzón Foundation
Raquel Barajas-Azpeleta, PhD, is Head of the Research Department at Luzón Foundation in Madrid, Spain. The Foundation promotes ALS research by funding basic, translational, and clinical research projects, coordinating the Spanish ALS Research Network, supporting clinical trials, and organizing scientific meetings.
Raquel completed her PhD in Neurobiology at the Stowers Institute for Medical Research in the United States before undertaking postdoctoral research at the Champalimaud Foundation in Portugal. She now oversees Luzón Foundation’s national and international research activities, working closely with researchers, clinicians, pharmaceutical companies, CROs, and people living with ALS. She also serves on several ALS patient advisory boards.
Laura Birks
Executive Director of Research, MND Australia
Laura Birks is Executive Director of Research at MND Australia, where she leads the organization’s strategic research investment and collaboration agenda. She supports innovative projects that test new ideas and accelerate progress toward effective treatments and improved care.
MND Australia has funded research since 1987, with a strong emphasis on early-stage and translational research that can rapidly improve clinical practice and the lives of people living with MND. Laura works closely with researchers, clinicians, state associations, people living with MND, and international partners to ensure research priorities reflect community needs.
With a background in research management, policy, and the not-for-profit health sector, Laura is committed to strengthening international collaboration and ensuring research investments deliver meaningful impact.
Nicholas Cole, PhD
Head of Research, MND Association
Dr. Nicholas Cole completed his PhD at the University of St Andrews before undertaking postdoctoral research in St Andrews, Dundee, and Sydney. He later established his own laboratory at the University of Sydney, where he developed zebrafish models of ALS/MND and helped establish the MND Research Centre at Macquarie University.
Nick returned to the United Kingdom in 2018 to become Head of Research at the MND Association. Outside of work, he is an avid kitesurfer and Guinness World Record holder following his “KitetheReef” fundraising campaign for MND research.
Kuldip Dave, PhD
Vice President, Research, The ALS Association
Dr. Kuldip Dave is Vice President of Research at The ALS Association. He previously served as Director of Research Programs at The Michael J. Fox Foundation for Parkinson’s Research, where he spent nine years developing and implementing the Foundation’s research strategy in Parkinson’s biology. Dr. Dave earned his undergraduate degree in biology from Rutgers University and a PhD in Pharmacology and Physiology from Drexel University College of Medicine. Before joining the non-profit sector, he spent five years in the biotechnology and pharmaceutical industry.
Amy Easton, PhD
Director of Scientific Programs, Target ALS
Amy Easton received her PhD in Neuroscience from Northwestern University and completed a postdoctoral fellowship at The Rockefeller University. She then moved into industry, first as a Senior Scientist at Bristol Myers Squibb, where she led preclinical drug discovery programs for schizophrenia and Alzheimer’s disease, and later as Head of Translational Neuroscience at Genentech.
At Genentech, Amy supported neurodegenerative disease research, including multiple ALS programs, biomarker development, and RNA-directed therapeutic strategies. In 2022, she joined Target ALS as Senior Director of Scientific Programs, where she oversees research funding opportunities, the development of shared research tools and resources, and the Global Natural History Study in ALS.
Natalie Gauld, ONZM, PhD
Research Advisor and Best Practice Advocate, Motor Neurone Disease New Zealand
Natalie Gauld trained as a pharmacist and researcher and holds a PhD in General Practice. Throughout her career she has worked to improve access to medicines and health services through pharmacy practice and research. In 2023, she was appointed an Officer of the New Zealand Order of Merit (ONZM) for services to pharmacy and health.
Since being diagnosed with ALS in March 2022, Natalie has continued to champion research and equitable access to care. She leads a nationwide study of people living with motor neurone disease, their families, and the bereaved, while also supporting clinical trials and patient management research in New Zealand. She serves on the Steering Group for the Motor Neurone Disease Patient Registry in New Zealand.
An enthusiastic advocate for outdoor accessibility, Natalie has completed extensive trail rides across New Zealand on a three-wheel electric cycle. She also holds 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. Before taking on this role, she spent 19 years as a neuroscience researcher, focusing first on neuroplasticity and later on neurodegeneration. She then served for 15 years as Scientific Coordinator for Edinburgh Neuroscience.
At MND Scotland, Jane oversees the organization’s research investment portfolio, including support for the internationally recognized MND-SMART platform trial. Her work focuses on ensuring that research funding accelerates progress toward effective treatments and improved care for people living with MND.
Agnes Nishimura, PhD
Lecturer in Neuroscience, Queen Mary University of London
Dr. Agnes Nishimura is a Lecturer in Neuroscience at Queen Mary University of London. She earned her degree in Biological Sciences from the University of São Paulo, Brazil, and completed her PhD in Human Genetics at the same institution. During her doctoral research, she identified a mutation in the VAPB gene responsible for an atypical form of familial ALS that is the most common inherited form of ALS in southeast Brazil.
Following her PhD, Agnes joined Professor Christopher Shaw’s laboratory at King’s College London, where she contributed to the discovery of the FUS gene as a cause of ALS. Today, she leads her own research group at Queen Mary University of London, investigating the disease mechanisms of ALS and frontotemporal dementia using induced pluripotent stem cells (iPSCs) derived from people living with ALS. She also serves as Scientific Advisor to the Paulo Gontijo Institute.
Bec Sheean, PhD
Director, Cure Research and Programs, FightMND
Bec Sheean, PhD, is Director, Cure Research and Programs at FightMND in Melbourne, Australia. FightMND funds translational research projects designed to bring promising treatments and clinical trials to people living with MND.
She oversees FightMND’s research grant programs, which support pre-clinical and clinical MND research throughout Australia and internationally, as well as FightMND-funded clinical trials. Through her role, Bec works closely with researchers, clinicians, pharmaceutical companies, CROs, and government to develop large-scale collaborative research initiatives. She also coordinated the FightMND Australasian MND Symposium.
Kelsie Snow
Project Manager, Alberta ALS Research Network
Kelsie Snow is Project Manager of the Alberta ALS Research Network, a collaboration between the ALS Society of Alberta and the province’s leading ALS clinicians and researchers.
Her advocacy began in 2019 when her husband, Chris, was diagnosed with familial ALS (SOD1 A4V). Chris participated in the Phase 3 VALOR trial for tofersen and lived more than four years following his diagnosis before passing away in 2023.
Together, Kelsie and Chris publicly documented their family’s journey to raise awareness and research funding. Through partnerships, including with the Calgary Flames, they helped raise more than CAD $600,000 for ALS research supporting projects at the University of Miami, Sunnybrook Health Sciences Centre, and the national CAPTURE ALS study.
David Taylor, PhD
Vice President, Research & Strategic Partnerships, ALS Society of Canada
Dr. David Taylor earned his PhD in Pathology from McGill University in 2006 after completing a degree in Biomedical Toxicology. His doctoral research focused on disease mechanisms in ALS, beginning a career dedicated to advancing ALS research. Following six years of postdoctoral research at EPFL in Switzerland and the University of Toronto, he joined ALS Canada in 2012.
David leads ALS Canada’s national research program, providing strategic leadership for research investments, grant programs, partnerships, fundraising initiatives, and knowledge translation. He is committed to supporting researchers while communicating scientific advances in ways that are meaningful and accessible to the ALS community.
Pauline van der Velden
Research Grant Manager, Stichting ALS Nederland
Pauline van der Velden is Research Grant Manager at Stichting ALS Nederland (ALS Foundation Netherlands), which funds research into ALS/MND, PLS, and PSMA, while also supporting projects that improve quality of life and care for people affected by these conditions.
Pauline oversees the Foundation’s research grant process from proposal review through project monitoring and reporting. She holds BSc and MSc degrees in Biomedical Sciences from Utrecht University and previously worked in the pharmaceutical industry, focusing on clinical trials. She is passionate about international collaboration to accelerate progress in ALS/MND research and care.
Fernando Vieira, MD
CEO and Chief Scientific Officer, ALS Therapy Development Institute
Fernando Vieira is Chief Executive Officer and Chief Scientific Officer of the ALS Therapy Development Institute (ALS TDI), a nonprofit research institute dedicated to discovering and advancing treatments for ALS. He has focused on ALS research since 2001, leading work spanning basic science, preclinical drug development, translational research, biomarkers, and clinical development.
His research has contributed to the advancement of multiple therapies into human clinical trials and to major discoveries involving SOD1 and C9orf72 biology. More recently, his team has pioneered digital biomarkers and machine-learning approaches to measuring ALS progression. Dr. Vieira also serves on the Scientific Advisory Board of the ALS Investment Fund and was named a Henri Termeer Fellow in 2024.
Paul Wright, PhD
Head of the MND Translational Challenge, LifeArc
Paul Wright leads the MND Translational Challenge at LifeArc, overseeing funding programs and scientific collaborations across academia, biotechnology, and the pharmaceutical industry. Before joining LifeArc, he worked as a drug discovery scientist at both LifeArc and Novartis, leading neuroscience and neurodegeneration research programs.
Paul completed his PhD in Neuroscience at King’s College London and undertook postdoctoral research at the University of Massachusetts Medical School and Harvard Medical School, where he developed systems to identify potential new treatments for MND. He also participated in the Academy of Medical Sciences Future Leaders in Innovation, Enterprise and Research (FLIER) programme.
Staff Liaison
Martina de Majo, PhD
Scientific Director, International Alliance of ALS/MND Associations
Martina de Majo, PhD, has extensive experience researching the disease mechanisms of ALS/MND and frontotemporal dementia (FTD). She earned her Bachelor’s degree in Biotechnology and Master’s degree in Pharmaceutical Biotechnology with honours from Sapienza University of Rome before completing her PhD in Clinical Neuroscience at King’s College London and postdoctoral training at the University of California, San Francisco.
In addition to her academic research, Martina worked as a principal investigator in industry, directing several National Institutes of Health projects focused on ALS/FTD disease modelling. She joined the International Alliance of ALS/MND Associations as Scientific Director in 2024 and now leads the Alliance’s global research portfolio.