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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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Scientific Advisory Council

The role of the International Alliance of ALS/MND Associations’ Scientific Advisory Council (SAC) 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

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.

Council Members

Jinsy Andrews, MD

Associate Professor of Neurology, Director of Neuromuscular Clinical Trials

Jinsy Andrews, MD, MSc, FAAN is an Associate Professor of Neurology, in the Division of Neuromuscular Medicine and serves as the Director of Neuromuscular Clinical Trials. She currently oversees neuromuscular clinical trials and cares for patients with neuromuscular disease, primarily with Amyotrophic Lateral Sclerosis (ALS). Dr. Andrews has extensive experience in all phases of human clinical trials and drug development in both the academic and industry settings. Dr. Andrews is the elected co-chair of the Northeastern ALS (NEALS) Consortium, which is a network of over 100 ALS clinical research centers internationally. She is also elected to the National Board of Trustees of the ALS Association and is a Fellow of the American Academy of Neurology (FAAN). Dr. Andrews has also received the Diamond Award for ALS clinical research from Wings Over Wall Street and the Muscular Dystrophy Association.

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.

Jeannine Heckmann, MD, PhD

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.

Caroline Ingre, MD, PhD

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.

Qing Liu, MD, PhD

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.

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.

Christopher J. McDermott, MD, PhD

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

Christopher McDermottProfessor Christopher McDermott studied for his medical degree at the University in Leeds, UK graduating in 1994. He then continued in 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. Professor 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 Professor 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.

Piera Pasinelli, PhD

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.

Martha Peña Preciado, MD

Neurologist, Colombia

Dr. Martha Peña Preciado is a neurologist at the Instituto Roosevelt in Bogotá, Colombia.

 

 

Nadia Sethi, DDS

Director of Community Outreach and Engagement, ALS Therapy Development Institute

Dr. Nadia Sethi is Co-Chair of the Northeast ALS Consortium Patient Education and Advocacy Committee. A dentist by training, she transitioned to research focused ALS advocacy after her husband’s diagnosis with the disease in 2019. She serves on the Programmatic Panel for the Department of Defense’s ALS Research Program, the Scientific Advisory Council for the International Alliance of ALS/MND Associations, and the Leadership Board of Genetic ALS and FTD: End the Legacy. She also manages a social media community of over 7,000, ALS Clinical Trials and Research, to share scientific content with the patient community. Previously she served as Director of Community Outreach at ALS TDI. Nadia is currently pursuing a Master’s in Pharmacy with a focus on Clinical Pharmacogenomics and Precision Medicine at University of Florida.

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’sfocus is 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.

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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

  • unnamed

    unnamed

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • Ali Var, Turkey

    Ali Var, Turkey

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

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

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Mauril Belanger

    Mauril Belanger

  • Liam Dwyer, England

    Liam Dwyer, England

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

    Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

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

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

  • Shay Rishoni

    Shay Rishoni

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Dick Dayton, USA

    Dick Dayton, USA

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

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

  • Roy

    Roy
    roy

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

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

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

  • 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

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

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

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

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

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

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

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Daniel Hare

    Daniel Hare

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Mark Miller

    Mark Miller

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Willi Klein

    Willi Klein

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