• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Twitter

International Alliance of ALS/MND Associations

  • Members’ Login
  • Contact
  • Join
  • Donate
  • What is ALS/MND?
  • Events
    • Alliance Meeting 2021
    • Allied Professionals Forum 2021
    • ALS/MND Connect 2020
    • International Symposium on ALS/MND 2020
    • Awards
    • Webinars
  • March of Faces
  • Find an Association
  • Support for Members
    • Partnership Programme
    • Mentorship Programme
    • Alliance Support Grant
  • Advocacy
    • Advocacy Toolkit
    • Rights of People with ALS/MND
    • Biogen – Tofersen
    • BrainStorm Cell Therapeutics – NurOwn
    • Collaborative Medicinal Development – CuATSM
    • Cytokinetics – Reldasemtiv
    • Right to Try
    • Unproven (Off-Label) Treatments
    • US FDA Orphan Drug Designation
    • T Regulatory Cell Therapies
    • Amylyx – AMX0035
    • Kadimastem – AstroRx
  • Global Day
  • Resources
    • Submit a Resource
  • Newsletters
  • About
    • About the Alliance
    • Newsletter subscription
    • Board of Directors
    • Committees/Advisory Councils
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Governance Committee
      • Budget and Finance Committee
    • Staff
    • History

Click here for Coronavirus (COVID-19) updates

Annual Alliance Meeting 2018 – Presentations

After another hugely successful and highly informative Annual Alliance Meeting in Glasgow, many of you requested that we share the Presentations that took place.

This will enable members that were unable to attend the event access to all of the Presentations, listen to them again at your leisure and also perhaps translate them into your own language to share with your Associations.

Below is the list of all the Presentations, just click on them to view:

Presentations on Advocacy:

  1. Introducing An Advocacy Service – Roslyn Scholarios MND Scotland
  2. 10 Years of NDIS Influencing – Carol Birks MND Australia 
  3. The United States National ALS Register – Paul Mehta 
  4. ALS Centers – Christine Tabuenca – ARSLA
  5. Influencing and Voluntary Assisted Dying – Rod Harris MND Victoria – Notes 
  6. From Side of Desk to Front of Mind – Tammy Moore ALS Canada

Presentations on Programming for PALS/CALS:

  1. Craig Stockton – Creating Educational Videos
  2. Online Support – Efrat Carmi – Israel Association 
  3. Challenges in India for Caregivers of Patients – Ajay Gupta Asha Ek Hope Foundation of MND/ALS
  4. Project Revoice – Brian Frederick
  5. The Diversified services and awareness campaigns of ALS Liga Belgium – Lisa Castro
  6. Introduction of communication support activities in Japan – Katsushi Tamaki

Presentations on Organisational Development:

  1. Nina Levitskaya Russian Charity, Advances after the 10th Anniversary – Gleb Levisky
  2. A cause for all – Adriana Oda

Presentations on Partnerships:

  1. Together we’re Strong! – The Dutch approach – Theo Meister
  2. Project ‘ANDAR’ – Pablo Aquino/Dario Ryba

Presentations on Stakeholder Engagement:

  1. Improving MND Care Survey – Nick Goldup

Presentations on Looking to the Future:

  1. Blink to Speak – Geet Rathi

Scientific Update Presentation: Dr David Taylor – Watch here

 

 

 

Primary Sidebar

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

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

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

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

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

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

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

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

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

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • 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

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • 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

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

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

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

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Ian Roberts

    Ian Roberts

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

Learn more about the March of Faces

ALS/MND Meetings

  • Annual Meetings 2020
  • Awards
  • Webinars

Past meetings

  • 2019 Meetings
  • 2018 Meetings
  • 2017 Meetings
  • 2016 Meetings
  • 2015 Meetings
  • 2014 Meetings
  • 2013 Meetings
  • 2012 Meetings
  • 2011 Meetings

Allied Professionals Forum Registration

The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.

Click here to register for the Allied Professionals Forum

Footer

Support the Alliance

Please donate

Please consider making a donation to support our work. Thank you!

Latest Tweets

  • January 2021 Newsletter - https://t.co/658q8pNWbM January 22, 2021 8:59 pm
  • An earlier tune by @RoyTaylor10 "Watch Your Back MND" https://t.co/Q4AsjcAEvR We see you there too… https://t.co/9Bcb9E9Dj9 January 17, 2021 4:24 pm
  • Congratulations! https://t.co/r2lwGwEKWC January 6, 2021 1:31 am

Keep in touch

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

Return to top of page
  • Disclaimer
  • Privacy notice & Cookies
  • Sitemap

Copyright © 2021 The International Alliance of ALS/MND Associations. All rights reserved.

Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login