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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

  • Debbie Craghill, USA

    Debbie Craghill, USA

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

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

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

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

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

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

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

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

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

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

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

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

  • Chen Chun-Chin

    Chen Chun-Chin

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

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

  • Mauril Belanger

    Mauril Belanger

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Jean

    Jean
    jean

  • Lombana, Spain

    Lombana, Spain

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

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

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Daniel Hare

    Daniel Hare

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Ian Roberts

    Ian Roberts

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Wilfried Leusing

    Wilfried Leusing

  • Hollister

    Hollister
    hollister

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Mark Miller

    Mark Miller

  • Bayley, Australia

    Bayley, Australia

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

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

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

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

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