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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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Understanding ALS/MND Research

The following are resources submitted by Members of the International Alliance of ALS/MND Associations on the topic of Understanding ALS/MND Research.

ALS CANADA RESEARCH PROGRAM

ALS research is at a time of unprecedented excitement and momentum: there has been more progress in the last 5 to 7 years than in the last century. Many of the top ALS researchers in the world believe the scientific community is now poised to find treatments that can significantly alter the course of the disease, and that lack of funding is the only limitation standing in the way of effective ALS treatments being developed sooner rather than later.

https://www.als.ca/research/

Language: English
Subject areas: Basic and Clinical Research

BOLETINES CIENTÍFICOS DE FUNDELA

El boletín científico de FUNDELA publica resúmenes y artículos referentes a los últimos avances de la investigación, tratamientos sintomáticos y cuidados al paciente con Esclerosis Lateral Amiotrófica (ELA). Se envía periódicamente a más de 400 suscriptores, entre los que se encuentran profesionales de la salud, pacientes y familiares de España y Latinoamérica.

Todos los boletines pueden descargarse en nuestra web de forma gratuita.

http://www.fundela.es/documentacion/boletines/

Language: Spanish
Subject areas: Basic and Clinical Research

ALS TDI WEBINARS

Each month, ALS TDI brings together researchers from our lab and others for a conversation about an important topic to patients today. These can be on a specific trial, an emerging technology, or a broad theory gaining notoriety in the effort to combat ALS. These conversations are designed to ask these researchers direct questions and to provide a place where YOU and YOUR family can speak directly to those working on your behalf at ALS TDI and other labs. These webinars are recorded, but we encourage folks to join us live as your questions and interaction with these researchers is incredibly important.

https://www.als.net/als-webinars/

Language: English
Subject areas: Basic and Clinical Research

ALS THERAPY DEVELOPMENT INSTITUTE – RESEARCH CENTER

We are the world’s foremost drug discovery center focused solely on ALS. Pioneering the ‘nonprofit biotech’ model, we have placed the person with ALS at the center of every decision made in our labs. Our interdisciplinary, industry-trained team of scientists collaborate daily in our labs and through academic and pharmaceutical company partnerships across the globe to discover cures for ALS.

https://www.als.net/als-research/

Language: English
Subject areas: Basic and Clinical Research

THE MND RESEARCH INSTITUTE OF AUSTRALIA (MNDRIA)

The Motor Neurone Disease Research Institute of Australia (MNDRIA) is the research arm of MND Australia.

The MNDRIA was established in 1984 as a national organisation promoting medical and scientific research into MND. The organisation has been driven forward by the vision to understand the causes, find effective treatments and discover cures for MND.

http://www.mndaust.asn.au/Discover-our-research/Latest-research.aspx

Language: English
Subject areas: Basic and Clinical Research

RESEARCH AT THE LES TURNER ALS RESEARCH AND PATIENT CENTER AT NORTHWESTERN MEDICINE

Northwestern University Feinberg School of Medicine is known the world over for groundbreaking ALS research and the Les Turner ALS Foundation is proud to support three research laboratories here.

http://lesturnerals.org/research-initiative/

Language: English
Subject areas: Basic and Clinical Research

EUROPEAN NETWORK FOR THE CURE OF ALS (ENCALS)

ENCALS is a network of ALS centres in Europe. ALS Centre membership is open to Universities/Hospitals in Europe with ALS clinical/research activity.

https://www.encals.eu

Language: English
Subject areas: Basic and Clinical Research

PROJECT MINE

Project MinE researchers plan to map the full DNA profiles of at least 15,000 people with ALS and 7,500 control subjects, and to perform comparative analyses on the resulting data.

https://www.projectmine.com/

Language: English
Subject areas: Basic and Clinical Research, Patient Registries

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Advocacy

  • Advocacy Toolkit

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Wilfried Leusing

    Wilfried Leusing

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Jack Buzby, USA

    Jack Buzby, USA

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Liam Dwyer, England

    Liam Dwyer, England

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

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

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

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • 727747090571358167

    727747090571358167

  • Christian Bär, Germany

    Christian Bär, Germany

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • IMG_1211

    IMG_1211

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

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

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

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