• 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
      • Voice Preservation
      • 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
      • Emergency Preparedness 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
  • Support for Health Professionals
    • Breaking the News in ALS/MND
  • 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 Innovation 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.

Dr. Christopher J McDermott

Professor of Translational Neurology, NIHR Research Professor, the University of Sheffield, Sheffield Institute for Translational Neuroscience

Christopher McDermottProf McDermott studied for his medical degree at the University in Leeds, UK graduating in 1994. He then continued is general medical and specialist neurology training in Leeds before taking up a clinical research training fellowship at the University of Newcastle upon Tyne. He moved to the University of Sheffield with Professor Dame Pamela Shaw in 2000 to undertake his Wellcome Trust Research Training PhD Fellowship and to complete his Specialist Training in Neurology to become a Consultant Neurologist in 2006. Prof McDermott is now the Professor of Translational Neurology at SITraN and a Consultant Neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust regularly undertaking specialist MND and neuromuscular clinics in Sheffield.

The main drive of Prof McDermott’s research programme is developing the evidence base for delivering supportive and symptomatic care for patients living with motor neuron disease. He also undertakes clinical trials in MND and is interested in how trials can be delivered in a more inclusive manner and lead to answers about potential therapies much quicker.  He collaborates nationally and internationally, chairing the UK MND Clinical studies group and being an executive board member of ENCALS and TRICALS.

Dr. Nadia Sethi

Director of Community Outreach and Engagement, ALS Therapy Development Institute

Dr. Nadia Sethi works for ALS TDI as Director of Community Outreach and Engagement.  In this role, she shares information about approved and investigational treatments, clinical trials, and research with people living with ALS, and their families.  She is a dentist by training, completing her Doctor of Dental Surgery in 2002 at UCLA, following a Bachelor of Science in Biochemistry and Art History in 1998, also from UCLA.  Currently, Nadia is seeking a Master of Science in Pharmacy with a concentration in Personalized Medicine from the University of Florida.  Nadia lost her husband to ALS and has been involved with many advocacy efforts to support new treatments since his diagnosis in 2019.  She co-chairs the NEALS Patient Education and Advocacy committee, sits on the ALSRP Programmatic Panel for the US Department of Defense’s Congressionally Directed Medical Research Program, and serves on several ALS patient advisory boards.

Board Liasion

Pablo Aquino

Pablo Aquino is a Certified English/Spanish Translator, Journalist, and the Secretary of the ALS Association of Argentina (Asociacion ELA Argentina), first and only charity exclusively focused on ALS in the country. He was one of the Association’s co-founders in November 2011, and has been assisting in the management of projects along with President Dario Ryba and the rest of the board, and developing the international relations of this institution since then. He was the coordinator and personal interpreter of international visits in Argentina, such as Drs. Lucie Bruijn, Jonathan Glass, Ammar Al-Chalabi, Hiide Yoshino and Angela Genge. Pablo has been the speaker for Asociacion ELA Argentina in every Annual Meeting of the International Alliance of ALS/MND Associations since 2013, and also participated in the constitution of UNELA, the Latin American Union of ALS/MND Associations.

His older and only brother, Alejandro, died of ALS in April 2017.

Primary Sidebar

About

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

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

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

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

  • Daniel Hare

    Daniel Hare

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Art Eggert, USA

    Art Eggert, USA

  • Fabio Carvalho

    Fabio Carvalho

  • Chen Chun-Chin

    Chen Chun-Chin

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Ann Nicol

    Ann Nicol

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Angie Bordaen, Diagnosed 2014 - ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Willi Klein

    Willi Klein

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

  • Jack Buzby, USA

    Jack Buzby, USA

  • Ian Roberts

    Ian Roberts

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • 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

  • Christian Bär, Germany

    Christian Bär, Germany

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Ali Var, Turkey

    Ali Var, Turkey

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Mark Miller

    Mark Miller

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Roy

    Roy
    roy

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

Learn more about the March of Faces

Latest Tweets

  • Just now

Footer

Subscribe to our Bi-Monthly Newsletter

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