Loreto Kirribilli sisters, Sarah Scalercio in Year 8 and her sister Victoria in Year 11, held a fundraising day on 8 May to raise awareness about MND as well as money for research. Sarah said of the day, "My sister Victoria and I organised the fundraiser as it is a charity close to our hearts. Last year our father died from MND and we are determined to make a difference and support this worthy cause. Overall it was an extraordinary day that raised $1,300! A huge thank you to all the Year 8 students who baked, helped sell and collect money, and to Mrs Cooke for helping organise it. Most importantly thank you to the Loreto Kirribilli girls who supported and made the day the success it was." Thank you girls for your wonderful support!  

A big thank you to Joanne Moroney who organised her third Dale's Day event raising $3,150 in support of MND NSW. Around 80 family and friends gathered for a family barbecue and picnic, along with a fantastic game of cricket! Our thanks to Joanne and her family and friends for their continued support.

The Illawarra Walk to d'feet MND is over for another year and what an event it was, despite the rain that arrived to challenge. With over $23,000 raised it is one of our most successful Walks in the Illawarra yet! A big thank you to our wonderful sponsors Bulli Surf Club, Woonona Lions Club, Duncan Stockcrates, i.98, Win TV, Grand Ridge Brewery, Xpresso Mobile Cafe Wollongong, Responder1, Waliscags and our wonderful volunteers. Thank you also to the wonderful team at Illawarra Health and Medical Research Institute it was great to have you there.

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 https://is.gd/mndbereavementsupport. 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.

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