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International Alliance of ALS/MND Associations

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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: Dr. David Taylor

Dr. David Taylor, Vice President of Research, 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.

Council Members

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. Luis Barbeito, M.D. ALS Researcher, Uruguay

Dr. Luis Barbeito has worked for almost three decades in deciphering the cellular basis and therapeutics of ALS. In particular, he and collaborators have analyzed the pathogenic role of glial cells in regulating motor neuron death in preclinical ALS models, leading to the preclinical characterization of several drugs targeting glial cells such rilizole, mitoQ, dichoroacetate and masitinib.  One major research contribution was aimed at understanding how the cellular microenvironment surrounding motorneurons can regulate the ALS progression after disease onset. The discovery of a distinct population of aberrant and neurotoxic glial cells has allowed Dr
Barbeito’s group to propose innovative therapeutic approaches to specifically kill these cells using cancer drugs such as tyrosine kinase inhibitors, that are being tested translationally.  During decades, he has established different ALS collaboration research networks internationally and in South America. Luis Barbeito has published over 100 articles in international scientific journals and has tutored many PhD students in the field of motor neuron diseases.  He is a member of the National Academy of Science of Uruguay and of the Third World Academy of Science (TWAS).

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. Gethin Thomas, Executive Director, Research, MND Australia

Dr. Gethin has over 20 years experience as a biomedical researcher in musculoskeletal diseases, publishing more than 65 papers and securing close to $4M in research funding. He has extensive reviewing experience both as a manuscript reviewer and serving on Australian and international grant review panels.

As a Research Manager, he has a directed a university Research Office and Higher Degree by Research programs and served as an Associate Dean of Research. He has extensive experience of high-level research strategy as well as a deep understanding of the grant system from the preparation, application and review process through to management of funded projects.

When not immersed in research he can be found enjoying time at home with his wife and 9-year old, taxiing said child to sporting events or out on his bicycle enjoying any big hill he can find.

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.

Board Liaison

Gorrit-Jan Blonk, ALS Netherlands

Gorrit-Jan BlonkI have been the CEO of ALS Netherlands for more than 4.5 years and a member of the Board of Directors of the International Alliance of ALS/MND Associations since December 2015. As an Alliance delegate and a Board member, I joined the worldwide fight against ALS/MND because I strongly believe in international collaboration in all the things we do. By working together, we will defeat ALS/MND faster than only working nationally. Sharing ideas and working together in the Alliance is key. That is why I am proud to serve as a Board member.

Primary Sidebar

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

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

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

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

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

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

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

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Ian Roberts

    Ian Roberts

  • 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

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • 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

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

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

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

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

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

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

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • 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

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

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

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

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Marcel R. Wernard, Diagnosed 2016 - ALS Patients Connected, The Netherlands

    Marcel R. Wernard, Diagnosed 2016 – ALS Patients Connected, The Netherlands

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

Learn more about the March of Faces

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The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.

Click here to register for the Allied Professionals Forum

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