MND impacts the lives of many – the person with MND, and their family and friends. Today we are posting a survey to the family carer of MND NSW members who died from MND in 2016, 2017 and 2018. The survey is part of a research study being conducted by La Trobe University which hopes to gain insight into the experiences of family carers whose family member died from MND between 2016-2018. This valuable information will help us to better understand the needs of carers. We encourage you to participate if you receive a survey in the post by completing and returning the survey in the reply paid envelope provided by 5 June. Alternatively you can complete the survey online at If you prefer a paper copy and you have not received one in the post by 23 May, please let us know. If you have any questions regarding the study, please contact Leanne Jiang on This email address is being protected from spambots. You need JavaScript enabled to view it.. We greatly value your contribution.

Results from the Phase 2 clinical trial of FORTITUDE-ALS have recently been made available. Here is the update from MND Australia. "The trial failed to meet either of its primary or secondary endpoints, with the trial finding the following:

  • no statistical significance demonstrated for change in slow vital capacity (SVC) from baseline following 12 weeks of dosing; and
  • dose-response analyses for the secondary endpoint failed to demonstrate statistical significance between reldesemtiv and the placebo arms.

Congratulations and a very big thank you to Alli Young and everyone that assisted in organising a Trivia Night held recently at the Hunter Belle Cheese Cafe in Muswellbrook. The event was a great success raising $5,240 in support of this year's Walk to d'Feet MND Hunter. Pictured is the fantastic support crew from the event! 

We will kick off MND Week this year with the Illawarra Walk to d'Feet MND at Bulli on Sunday 5 May, then lots of sites across the week. 

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