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 Rachel Patterson, the General Manager, 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!


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.