Selected presentations from the ALS Canada 2017 Virtual Research Forum held in August 2017 are now available for on-demand viewing below. The purpose of the forum was to share information about ALS/MND research with people living with the disease. 

Biomarkers for C9ORF72-associated ALS presented by Dr. Tania Gendron, Mayo Clinic

Cannabinoid use in ALS presented by Dr. Mark Ware, McGill University

Cognition in ALS – it’s not what you think presented by Dr. Michael Strong, Western University

Getting to know pimozide in ALS presented by Dr. Lawrence Korngut, University of Calgary

Lazarus by Lunasin? Untangling an ALS X-file presented by Dr. Richard Bedlack, Duke University

Masitinib for the treatment of ALS presented by AB Science

Protein misfolding in ALS presented by Dr. Neil Cashman, Vancouver Coastal Health ALS Clinic; University of British Columbia

Skin models for the study of ALS presented by Bastien Paré, Laval University

The role of ataxin-2 in ALS presented by Lindsay Becker, Stanford University

Understanding the role of the neuromuscular junction in ALS presented by Elsa Tremblay, Université de Montréal

Or read more here:




At MND NSW we have been giving the new eye tracking /eye gaze features in the Microsoft Windows 10 Fall Creators Update 1709 (rolling out October 2017 onwards) a bit of a road test. The short story is that the Eye Control feature in this standard Windows update, when used together with an eye tracking camera (we bought ours for AU$200 - see below), allows you to use your eyes on your Windows computer instead of a keyboard, mouse or touchpad.

In the past year we have worked hard to support our members in achieving key communications needs. We have helped them with the communications challenges presented by daily life. We have reorganised and augmented our team to facilitate the individualised pre-planning and third-party communications necessary to help members aged under 65 years make the most of their NDIS plans. We have continued to work on communicating our cause to the public in order to fund research that will lead to a cure. Read more about our work in the MND NSW Annual Review 2017.

Palliative Care Australia has developed a mobile app, AllowMe!, to assist people to create a community of care around a person at the end of life. AllowMe! supports communities to care for people with a serious illness by making it easier to help in practical ways. Carers and care recipients can list tasks, events and visiting times to provide suggestions of how people can assist.

A very big thank you to Casey Mitchell who organised an MND Awareness Trivia Night in Cooma. Casey said of the night, "I am very happy to announce that thanks to all the generosity of our local communities last night was a success we had a decent turnout of near 50 people and all up raised $1,723." Thank you Casey for all your hard work towards this event and for your support of MND NSW. 

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