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2016 Meetings

Convention Centre Dublin, Dublin, Ireland

December 2016

Below, you will find archived presentation materials from the 24th Annual Alliance Meeting and Ask The Experts session, held on 4-5 December 2016, and the 14th Annual Allied Professionals Forum, held on 6 December 2016.

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

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

2016 Alliance Meeting

View or download the 2016 Alliance Meeting Agenda and Abstract Book.

For each presentation, you can click the title to watch on YouTube.

If you wish, you can browse all of the Alliance Meeting presentation videos at once on our 2016 Alliance Meeting YouTube playlist!

Opening Remarks from the GM: Year In Review – Rachel Patterson, General Manager

Beyond Awareness Gaps – Hiroki Okabe, Japan ALS Association

The Cost of Achieving Your Goals: Assistive Technology Program in Israel – Efrat Carmi, IsrALS

A Comprehensive Information and Education Resource for People with MND, their Carers, Health and Community Care Providers – Gina Svolos, MND Australia

New Challenges to Our Association – Alessandra Dorca, ALS Pro-Cura Association

ACELA: A Vision of Hope – Rocio Reyes, ACELA, Colombia

Life Is Now – Gudjon Sigurdsson, MND Iceland

A Phased Shift in MND Care in Scotland – Craig Stockton, MND Scotland

Victories and Partnerships – Tatiana Mesquita e Silva, ABrELA

Local Fundraising for Project MinE – Gorrit-Jan Blonk, ALS Netherlands

Using the MND Association’s Experience to Promote Optimal Care and Support in Russia – Anna Kassianova, Martha-Mary Medical Centre “Miloserdie”

The South African MND Caregiving Experience: Lessons Learned from a Cross-Country Collaboration – Melinda Kavanaugh, University of Wisconsin-Milwaukee

First Ever ALS Student Exchange – Jodi O’Donnell, Hope Loves Company

The ALS Analyzer Mobile App: Engaging PALS in the Development of New ALS Monitoring Tools – Idit Ron, Prize4Life

PULSE – Christine Tabuenca, ARSLA

Precision Medicine: How Can It Help Advance the Discovery of ALS Subtypes and Speed Drug Development? – Rob Goldstein, ALS Therapy Development Institute

Meeting the Research Communication Challenge: Our Experience – Sally Light, MND Association of England, Wales and N Ireland

Scientific Update – Dr. David Taylor, ALS Canada

ALS Investment Fund – Gorrit-Jan Blonk, ALS Foundation of the Netherlands

Keys to Strong, Transparent Governance – Andrea Pauls Backman, Les Turner ALS Foundation

2016 Strategic Planning Workshop: Outcomes (No video available, click to download presentation PDF)

2016 Ask The Experts

Watch video of the 2016 Ask The Experts session, hosted by the Irish Motor Neurone Disease Association! Thank you to the ALS Association for sponsoring the live-stream. This session was live-streamed to accommodate people living with ALS/MND and their caregivers abroad, and questions were accepted through social media. A summary of the session appears below.

Watch the YouTube video of the 2016 Ask the Experts session: 2016 Ask the Experts

Clinical Trials in ALS/MND: Where Are We Now? Dr. Jeremy Shefner, MD, PhD Kemper and Ethel Marley Professor and Chair of Neurology and Senior Vice President of Barrow Neurological Institute

Stem Cells: The Hope and the Hype Dr. Jonathan Glass, MD Professor of Neurology and Pathology at Emory University School of Medicine; Director of the Emory ALS Clinic

Project MinE: The New Genetics of ALS/MND Dr. Jan H. Veldink, MD, PhD Professor of Neurology and Neurogenetics and Head of the Human Neurogenetics Unit at University Medical Center-Utrecht

Extended Q&A Session

2016 Allied Professionals Forum

View or download the 2016 APF Programme and Abstract Book.

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 2016 APF YouTube Playlist.

About the International Alliance of ALS/MND Associations – Carol Birks

The ALS Assistive Technology Challenge: Winners – Lucie Brujin

Message Banking: Impact on Quality of Life of People with ALS/MND – Lesley Doyle

Message Banking vs. Voice Banking: A Very Successful Proactive Model for People with ALS/MND – John M. Costello (no video available, click to download presentation PDF)

The Development of a Voice Banking Volunteer – Louise Rickenbach

Cultivating Compassion: Caring for Families Living and Dying with ALS/MND – Ronald Hoffman

Adopting a New Way of Working to Support and Provide Information for Families Where a Parent/Guardian Has ALS/MND – Karen Welsenaer

The Carers’ Alert Thermometer (CAT): Identifying ALS/MND Carers’ Support Needs – Mary O’Brien

Well-Being and Care Burden of Close Relatives to Persons with ALS-FTD – Brigit J. Hovmand

What Do People Living with ALS/MND Think About Their Swallowing? – Dominika Lisiecka

The Clinical Utility of a Self-Reported Swallowing Outcome Measure – Laurie Sterling

First Contact Group: An Anticipatory Approach to Palliative Care – Colin Pearson

Withdrawal of Mechanical Ventilation at Patient Request in ALS/MND – Alison Armstrong

Mechanical Insufflation Exsufflation (M-IE) and Breath Stacking: The Patient’s Experience – Rachel McConnell

Eyedriveomatic – Karen Pearce

I Can Do It: The Impact of a One-Day Training Intervention on Occupational Therapist and Speech Pathologist Confidence in Working with Assistive Technology for Clients with ALS/MND – Kristina Dodds

How You Can Use 3D Printing in Your Practice – Kevin Caves

 

Thank you to all of our wonderful presenters and to our member host, Irish Motor Neurone Disease Association, whose generous hospitality made the 2016 Meetings possible.

Here is our group photo from the 24th Annual Alliance Meeting, with 110 members and friends in attendance!

dublin-group-photo

Thank you to our 2016 Platinum Sponsor, Cytokinetics! As a leader in muscle biology research, Cytokinetics is dedicated to its mission of improving the lives of people confronting devastating diseases of impaired muscle function.

 

Cytokinetics

Primary Sidebar

  • 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

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

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

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

  • 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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

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

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

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

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

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

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – 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

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

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

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

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

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

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

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

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

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, 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

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

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

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Ian Roberts

    Ian Roberts

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

Learn more about the March of Faces

ALS/MND Meetings

  • Annual Meetings 2020
  • Awards
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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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