• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Instagram
  • Twitter
  • YouTube

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • What is ALS/MND
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights of People with ALS/MND and Caregivers
    • Research
      • Open Science
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
      • Open Label Extension
    • Advocacy
      • Advocacy Toolkit
    • Clinical Care
      • Genetic Counselling & Testing
      • Mental Health Support
      • Nursing and Symptom Management
      • Nutrition and Swallowing
      • Occupational Therapy and Activities of Daily Living
      • Physiotherapy and Mobility
      • Respiratory Care
      • Speech Therapy and Communication
      • Support for Family & Caregivers
      • Technology
    • Drugs in Development
      • AB Science – Masitinib
      • Amylyx – AMX0035
      • Biogen – Tofersen
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Orphazyme – Arimoclomol
      • T Regulatory Cell Therapies
    • Approved Drugs
      • Radicava/Edaravone
      • Neudexta
      • Riluzole/Tiglutik
  • Events/Programs
    • Calendar of Events/Programs
    • Alliance Webinars
    • Alliance Meeting
    • Allied Professionals Forum
    • ALS/MND Connect
    • Global Day
    • March of Faces
    • International Symposium on ALS/MND
  • About
    • Who We Are
    • Board of Directors
    • Committees/Advisory Councils
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Governance Committee
      • Budget and Finance Committee
    • Staff
    • History
    • Archives
      • Newsletters
      • Meetings
    • Awards
      • Student Award Nomination
      • Forbes Norris Award Nomination
      • Humanitarian Award Nomination
      • Allied Health Professional Award Nomination
  • Members
    • Member Registration
    • Forgot Password

Scientific Advisory Council

The role of the International Alliance of ALS/MND Associations’ Scientific Advisory Council is to be a centralized resource to review and provide global perspective on scientific and biomedical announcements, information and opportunities relating to ALS/MND.

Chair of the SAC

Dr. Gethin Thomas

Executive Director, Research, MND Australia

Gethin Thomas is the Executive Director, Research at MND Australia. He oversees the research grant program and manages national and international partnerships. A key aspect of this role if providing a conduit between research programs and the wider MND community through MND Australia and the affiliated State Associations. Gethin is also Chair of the Scientific Advisory Council of the International Alliance of ALS MND Associations which is a centralized resource to review and provide global perspective on scientific and biomedical announcements, information and research opportunities relating to ALS/MND.

Gethin has over 20 years of experience as a biomedical researcher, having published widely and secured almost $4M in research funding. He has extensive review experience across a wide range of journals as well as reviewing grants for Australian and International funding bodies. Over the last 10 years as a senior research manager, he has directed a University Research Office and served as an Associate Dean of Research. He has a deep understanding of research strategy and the research funding system from the grant preparation, application and review process through to management of funded projects at both the researcher and institutional level.

Council Members

Dr. David Taylor

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.

Dr. Adriano Chiò

Neurologist, Italy

Dr. Adriano Chiò is a neurologist currently working in Torino, Italy. He is Professor of Neurology and Director of the ALS Center at the University of Torino and the Città della Salute e della Scienza Hospital, Torino, Italy. He is director of the ALS Expert Center in Torino, that aims for optimal diagnostic work-up, care and treatment for patients with ALS and other motor neuron diseases in Piedmont. He leads the Italian ALS Genetic (ITALSGEN) Consortium. Adriano Chiò, whose main areas of research are epidemiology, cognition, neuroimaging, and genetics of ALS, is best known for his research on risk of ALS in soccer players, the phenotypic heterogeneity of ALS and has contributed to the discovering of several ALS genes, including C9ORF72, VCP, MATR3 and KIF5A. He has published over 330 papers in peer-reviewed journals. He was awarded the 2015 Sheila Essay Award, presented by the American Academy of Neurology and ALS Association.

Dr. Nicholas Cole

Head of Research, MND Association 

Dr. Nicholas Cole, Head of Research for the MND Association in the UK. Nick completed his PhD in St. Andrews University in Scotland, UK before research postdocs in St. Andrews, Dundee 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, 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 Kitesurfer and Guiness world record holder after his ‘kitethereef’ MND fundraiser in 2015.

Dr. Qing Liu

Neurologist, China

Dr. Qing Liu is Associate Professor of Neurology in Peking Union Medical College Hospital, Beijing, China. She had been a neurologist after having received her MD. She obtained her PhD in medical genetics in Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing. Her research and clinical activities are dedicated to the cellular basis and therapeutics of people with neurogenetic disorders, especially Amyotrophic Lateral Sclerosis (ALS).

She has published papers in peer-reviewed journals and is in charge of national scientific research projects. She mentors young undergraduates in clinical and molecular-genetic investigation of ALS and related neurodegenerative disorders.  In the future, investigation on new achievable ALS models, like patient-derived induced prurient stem cell (iPSC), would be her main focus of interest, hoping to establish initiatives of biomedical breakthrough for ALS.

Dr. Jeannine Heckmann

Associate Professor of Neurology, University of Cape Town, South Africa

Dr. Jeannine Heckmann is Associate Professor of Neurology at the University of Cape Town, Cape Town, South Africa. She is director of the Neurology Research Group and the Neuromuscular service at Groote Schuur Hospital and the University of Cape Town. Her group has been involved in addressing clinical and molecular genetic based research questions related to neuromuscular diseases within the African context. An emerging research goal has been to include individuals with African genetic ancestry in the global ALS genomics challenge to discover new ALS targets and therapies. As such her group is part of the US-based CReATe consortium which is a collaborative effort to discover biomarkers and therapies for ALS and related disorders.

Dr. Kuldip Dave

Vice President, Research, The ALS Association

Dr. 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.

Dr. Caroline Ingre

Neurologist, Director, ALS Center at Karolinska University Hospital

Image of Dr Caroline Ingre

Dr. Caroline Ingre is a specialist in neuromuscular disease, and has been working with ALS for more than 10 years. She is Head of the ALS Center at Karolinska University Hospital which focuses on development and improvement of quality care and ALS care processes with focus on patients own reporting. She created a national ALS registry in Sweden and also the Karolinska Treatment Center, a national center solely focused on clinical trials for ALS. She has initiated several collaborations between Universities and University Hospitals in Sweden and hosts the national clinical ALS meeting.

Dr Ingre also leads an ALS research group at Karolinska Institute with main interests in epidemiology, risk and prognosis of ALS disease, the development of imaging methods, biomarker studies and psychological influence on ALS.

Dr. Piera Pasinelli

Director, Jefferson Weinberg ALS Center, Frances & Joseph Weinberg Professor in Neuroscience

Piera Pasinelli is the Frances & Joseph Weinberg Professor in Neuroscience at Jefferson University and the founder and Director of the Jefferson Weinberg ALS Center. For 12 years (2008-2020) she has been the Science Director of the Robert Packard Center for ALS Research at Johns Hopkins, where she is now a member of the Scientific Executive Committee.

Pasinelli graduated with a dual Bachelor and Master in Science from the University of Milan, Italy, where she studied Chemistry and Technology in Pharmaceutical Industry. She then obtained her PhD in Neuro-biochemistry for the University of Utrecht, The Netherlands (Rudolf Magnus Institute for Neuroscience). After graduating, she moved to the United States where she started her career working on understanding the molecular mechanisms underlying ALS pathogenesis, first as a post-doctoral fellow in Dr. Bob Brown’s laboratory at Massachusetts General Hospital-Harvard Medical School and, then, as an Instructor in Neurology at Harvard Medical School. In 2006, after 11 years in Boston, Dr. Pasinelli joined Thomas Jefferson University as the co-director of the Frances & Joseph Weinberg Unit for ALS Research, the area’s first and only research unit solely dedicated to the basic and translational study of ALS. In 2016, under Dr. Pasinelli’s leadership Jefferson expanded its ALS program adding a multidisciplinary clinic and a clinical-research program to complement its basic science laboratories and launching the Weinberg ALS Center. The Weinberg Center is structured around a new academic healthcare model at Jefferson, called Clinical and Research Integrated Strategic Programs (CRISPs), in which programs are developed based on disease focus, rather than medical or research specialty, creating a collaborative environment in which members from multiple disciplines work together around the patients’ needs, with a 360-degree approach that also includes research and innovative technology. Basic research is present in clinic, educating and involving the patients every step along the way.

Acknowledged as an expert in the cell death processes that overtake the central nervous system in ALS, Pasinelli has been working on understanding the pathogenic mechanisms that trigger ALS for the past twenty-five years. She received several awards for her commitment to science in ALS, including the Wings Over Wall Street Award from the Muscular Dystrophy Foundation and the Flame of Hope award from the ALS Association. Pasinelli’s background in neuro-biochemistry and her familiarity with the pharmaceutical industry and drug design, allow her to oversee the 360 bench-to-bedside approach taken to accelerate the pace to drug discovery for effective therapies for ALS.

Primary Sidebar

About

  • Who we are
  • Board of Directors
  • Committees/Advisory Councils
    • Scientific Advisory Council
    • PALS and CALS Advisory Council
    • Innovation and Technology Council
    • Governance Committee
    • Budget and Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Susan Anderson, Diagnosed 2014 - Hope Loves Company, USA

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Willi Klein

    Willi Klein

  • Fabio Carvalho

    Fabio Carvalho

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

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

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

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Elkin Ramiro Gaviria Muñoz, Diagnosed  December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Christian Bär, Germany

    Christian Bär, Germany

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Cath Muir

    Cath Muir
    Cath

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

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

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

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Jack Buzby, USA

    Jack Buzby, USA

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Peng Yi-Wen

    Peng Yi-Wen

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

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

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

Learn more about the March of Faces

Latest Tweets

  • Just now

Subscribe to our Bi-Monthly Newsletter

Fill out the form below to subscribe to the Alliance’s bi-monthly newsletter, packed with updates from members associations from around the world!

Footer

Keep in touch

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

"*" indicates required fields

 
This field is for validation purposes and should be left unchanged.
  • Email
  • Facebook
  • Instagram
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2023 The International Alliance of ALS/MND Associations. All rights reserved.


Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login