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International Alliance of ALS/MND Associations

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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

  • Jeff Sutherland

    Jeff Sutherland
    jspic

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

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

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Dick Dayton, USA

    Dick Dayton, USA

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

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

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Timmy, ALS Liga

    Timmy, ALS Liga

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

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Andrietta

    Andrietta

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Mauril Belanger

    Mauril Belanger

  • Brian Parsons

    Brian Parsons

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

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

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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Willi Klein

    Willi Klein

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • IMG_2658

    IMG_2658

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Steve

    Steve

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

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

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

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

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

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

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

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