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International Alliance of ALS/MND Associations

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Research Directors Forum

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, Cure Research and Programs, FightMND

Bec Sheean, PhD, is the Director, Cure Research and Programs at FightMND in Melbourne, Australia. 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 New Zealand

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.

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.

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.

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About

  • Who We Are
  • Board of Trustees
  • Advisory Councils/Committees
    • PALS and CALS Advisory Council
    • Innovation and Technology Council
    • Scientific Advisory Council
    • Advocacy and Public Policy Forum
    • Research Directors Forum
    • Governance Committee
    • Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Willi Klein

    Willi Klein

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Cath Muir

    Cath Muir
    Cath

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Wilfried Leusing

    Wilfried Leusing

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Ann Nicol

    Ann Nicol

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • 83

    83

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Mauril Belanger

    Mauril Belanger

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • 727747090571358167

    727747090571358167

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Brian Parsons

    Brian Parsons

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • unnamed

    unnamed

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