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International Alliance of ALS/MND Associations

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    • Fundamental Rights for People with ALS/MND and Caregivers
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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

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Ann Nicol

    Ann Nicol

  • Jack Buzby, USA

    Jack Buzby, USA

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • 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

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Fabio Carvalho

    Fabio Carvalho

  • Peng Yi-Wen

    Peng Yi-Wen

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • 83

    83

  • Hollister

    Hollister
    hollister

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Mauril Belanger

    Mauril Belanger

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Jon Newsome, USA

    Jon Newsome, USA

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

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

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

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

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Fabio Correia

    Fabio Correia

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Robbie Caliste, UK

    Robbie Caliste, UK

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

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

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Ali Var, Turkey

    Ali Var, Turkey

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

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

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

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

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

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

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

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

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Cath Muir

    Cath Muir
    Cath

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Bayley, Australia

    Bayley, Australia

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