• 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 2021
    • International Symposium on ALS/MND 2021
    • 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

2014 Meetings

Thon Hotel EU/The Square Brussels Meeting Centre, Brussels, Belgium

December 2014

Below, you will find archived presentation materials from the 22nd Annual Alliance Meeting and Ask The Experts session, held on 2-3 December 2014, and the 12th Annual Allied Professionals Forum, held on 4 December 2014.

We have shared materials from all presenters who gave us their permission, and the information is organised by event below.

For the Alliance Meeting, most links will prompt you to download the PowerPoint file used during the presentation; there are also video and media clips where possible.  We were fortunate to have video on-site for the Allied Professionals Forum, so we have provided links to YouTube videos of each presentation.

Feel free to browse, and if you have questions, get in touch with the Catherine Cummings, Executive Director, for more information.

2014 Alliance Meeting

The 2014 Alliance Meeting Programme Agenda was organised by theme. Below, themes appear in bold. Click the title of any presentation to download a PDF of the presentation file or other media used by the presenters.

Special Topic: Ice Bucket Challenge

How Water and Ice Made Supporting ALS Research “Cool” (PDF)
Rob Goldstein, ALS TDI, USA

Alliance Members: Ice Bucket Challenge (YouTube video)
Rachel Patterson, General Manager

Fundraising

Strategic Fundraising (PDF)
Rod Harris, MND Victoria (Australia)

Green Concert: Volunteers and Fundraising (PDF)
Jens Spanfelt, Muskelsvindfonden, Denmark

The Fundraising Program in Argentina (YouTube)
Dario Ryba and Pablo Aquino, ELA Argentina

Awareness and Advocacy

An Exciting Year for ALS Awareness in Italy (PDF)
Christian Lunetta, AISLA Onlus, Italy

ALS Awareness in Japan in 2014 – Achievements and Difficulties (PDF)
Yumiko Kawaguchi, Japan ALS Association (JALSA)

Low Cost/High Quality: A National Awareness Campaign (PDF)
Francisco Tellechea Rotta, Instituto Paulo Gontijo (IPG), Brazil

Challenges To Providing Services

Red Flags for MND: A Step Towards Earlier Diagnosis and Efficient Referral (PDF)
Steven Bell, The MND Association of England, Wales and Northern Ireland

Cultural Challenges in ALS Care (PDF)
Efrat Carmi, IsrALS, Israel

Quality of Care and Compliance of PALS in Russia (PDF)
Gleb Levitsky, Russian Charity ALS Foundation

Challenges To Providing Services (PDF)
Nicole Yarab, The ALS Association, USA

National and Regional ALS/MND Registries

SMART – MND (PDF)
Craig Stockton, MND Scotland

The Australian MND Registry: 10 Years On – Where to from Here? (PDF)
Janet Nash, MND Australia

Partnerships Update

Maximizing the Potential of Partnerships (PDF)
Kathy Mitchell, Canada

Nordic Partnership (PDF)
Video of 2014 Nordic Meeting (YouTube video)
Gudjon Sigurdsson, MND Association of Iceland

Strategic Plan & Working Groups

Overview of Strategic Plan 2012-15 and Report on 2014 Actions and Outcomes (PDF)
Carol Birks, Chairwoman

Services and Programmes

A Pilot AAC Project (PDF)
Bob Bestow, MND Scotland

The Development and Efficiency of the Support Group in Taiwan (PDF)
Yun-Ju Lin, Taiwan MND Association

Help and Hope for PALS (PDF)
Wendy Abrams, The Les Turner ALS Foundation, USA

The Light That Will Never Dim (PDF)
Kiki Qu, Taiwan MND Association

2014 Ask The Experts

Watch video of the 2014 Ask The Experts session, hosted by ALS Liga België, on their website.

You can also download the PowerPoint presentations from our esteemed presenters below:

Project MinE: An International ALS Whole Genome Sequencing Initiative, Professor Leonard van den Berg, Professor of Neurology and Director of the Netherlands ALS Center, University Medical Center Utrecht

Research Programs In Light Of The Ice Bucket Challenge, Dr. Lucie Bruijn, Chief Scientist, The ALS Association

Clinical Trials From Mouse To Man: Pitfalls of Translating Promising Studies, Dr. Orla Hardiman, Professor of Neurology, Trinity College Dublin

2014 Allied Professionals Forum

Read the 2014 APF Programme and Abstract Booklet here.

All presentations have been made available by our presenters and appear below.  For each presentation, you can click the title to watch on YouTube.

If you wish, you can browse all of the APF presentation videos at once on the Alliance’s 2014 APF YouTube Playlist.

About the International Alliance of ALS/MND Associations
Carol Birks

Executive function disorders: Engaging the team
Laurie Sterling, USA

To do or not to do? The conundrum the therapist faces in advising level of “doing” in ALS/MND
Helen Carey, UK

Role of the speech-language therapist in the multidisciplinary ALS/MND clinic: Insights learned and shared
Emily K. Plowman, USA

Developing an outreach service to set up NIV for patients with ALS/MND in their homes thereby averting hospital admission
Bernie Corr, Ireland

An evaluation of the airway clearance adjuncts prescribed in an Irish ALS/MND multidisciplinary clinic
Rachel McConnell, Ireland

Examing the impact of YouTube to teach patient care skills in ALS/MND
Beth Stephens, USA

Looking beyond the drug: A study exploring the experiences of ALS/MND patients attending a drug trial
Malabika Ghosh, UK

Care services navigators: Supporting personalisation and choice for people with ALS/MND
Pauline Matheson, UK

Developing a comprehensive and candid guide on end-of-life decisions for people with ALS/MND
Kaye Stevens, UK

Emotional legacies: What children need to know and how leaving it for them assists closure
Gabrielle Eirew, Canada

Compassion fatigue and burnout: Supporting staff with coping strategies
Sara Jane Murray, UK

Helping staff and volunteers to deal with compassion fatigue
Kathleen O’Hara, UK

The end-of-life experience of people with ALS/MND: Bereaved family carers’ accounts
Moira O’Connor, Australia

Exploring experience and awareness of bereavement support in family carers of people with ALS/MND
Mary O’Brien, UK

Equipment utilization in the ALS/MND population: Trends and timing
Sara Feldman, USA

Eyes That Speak: Social inclusion, work dignity and life quality for ALS/MND patients
Eduardo Jauregui, Argentina

ALS digitalk (ALS/MND and communication)
Aline Ollevier, Belgium

Use of a myoelectric orthotic to enhance functional performance in persons with ALS/MND
Amber Ward, USA

 

Thank you to all of our wonderful presenters and to our Belgian member association, ALS Liga België (The ALS League of Belgium), whose generous hospitality made the 2014 Meetings possible.

Here is our group photo from the 22nd Annual Alliance Meeting, with over 100 members and friends in attendance!

2014 Alliance Meeting Group Photo
Finally, we would like to recognise the sponsors who generously supported the 2014 Alliance Meeting and Allied Professionals Forum:

The ALS Hope Foundation          Biogen IdecCytokinetics        The ALS Association

Primary Sidebar

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • 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

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Ian Roberts

    Ian Roberts

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

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

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

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

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

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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

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

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

  • 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

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

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

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

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

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

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

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

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • 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

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

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

  • Creativity takes Courage! (Henri Matisse)In celebration of World Art Day (April 15th), tag an artist or share this… https://t.co/yfn4D6gmmA April 14, 2021 12:00 am
  • https://t.co/aKxWOqKnDZ @AsociacionELAar #ALSMNDWithoutBorders April 13, 2021 8:48 pm
  • maybe there is an opportunity for @TaylorMadeGolf to outfit wheelchairs around the world! #ALSMNDWithoutBorders https://t.co/qWFfwdJ3Eg April 13, 2021 3:36 pm

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