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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

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

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

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • 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

  • 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

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Ian Roberts

    Ian Roberts

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • 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

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

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

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

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

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

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

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

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

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

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

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • 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

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

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

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

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

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