Blog

On 2 and 3 November 2017, at the beautiful Japanese gardens in Cowra in Central West NSW, 18 carers of people with MND came together for the MND NSW Link and Learn program. This is a two day residential program for carers of people with MND who live in regional NSW and the ACT and, this year, we were very fortunate to have secured funding to run this program through a Westpac Community grant. At the end of each of our MND NSW education programs we ask participants to complete an evaluation. In the Link and Learn participant evaluation, 100% of participants said that it was a valuable opportunity to meet with other people who know what it is like to be caring for someone with MND and 93% agreed that it provided information so they can plan ahead and be prepared for change. All said that the program met and exceeded their expectations with comments such as .... “this program is a very valuable insight for anyone in a carers role with plenty of learning, laughter and knowledge gained”.

From 8 to 10 December 2017 the 28th International Symposium on ALS/MND will be held in Boston, USA. The annual Symposium is the largest medical and scientific conference specific to MND/ALS and is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management. Over 1,000 delegates will come from across the world to listen to over 100 talks and see around 450 posters. To see what will be discussed in these presentations, you can now download the full abstract book from the Taylor and Francis website (volume 18, S2 November 2017).

The MND Research Blog reports that Cytokinetics Inc. has announced in their official press release published on 21 November 2017, that they will not be continuing work on tirasemtiv after disappointing results in the latest Phase 3 clinical trial. The trial, known under the acronym ‘VITALITY-ALS’, tested whether the drug has a beneficial effect on the breathing function and muscle strength of people with MND.

2017 has seen many community events held across NSW and ACT. Special thanks must go to each and every organiser who gave so generously of their time to raise funds for MND NSW and awareness about MND. Thank you to the following supporters:

A big thank you for the generous support from LJ Hooker Cessnock who held a Charity Golf Day which raised $4,001.50 for MND NSW.