MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT, the Gold Coast and NT. We also provide information and education about motor neurone disease for health, community and residential care professionals.

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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.

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. 

Our members and their families are always welcome to call in and see us here at Gladesville. It is often a good opportunity to sit and chat as well as to find out a bit more about what we do here at MND NSW and just what we offer to our members.With that in mind we thought we would set a regular time for people to call in and see us for a coffee and a chat. Nothing formal, but there will be members of our team here who will be able to answer questions if you have them or to just make you a coffee or tea and have a social chat. It is also a great opportunity for people who are just learning about MND to come and connect with us.

A device the size of a small paperclip, created to give people with severe paralysis the ability to communicate again, has been approved for its first-in-human clinical trial - an early feasibility study (EFS) of the safety of the device - at The Royal Melbourne Hospital. Five patients, living within two hours of Melbourne, with a range of conditions including spinal cord injury, stroke, muscular dystrophy, or motor neurone disease, including amyotrophic lateral sclerosis (ALS) will be recruited during 2019 to trial the device.

On Sunday 3 March 2019 Channel 10 The Project spoke with sisters Kaitlyn and Jessica Ellis about the impact of having an MND related genetic mutation, which increases the risk of later developing MND. They also talked about MND Genies, the MND NSW closed unlisted Facebook group where people can connect and share their experiences. You can watch online here (the interview starts at around 15mins into the program) until 3 June 2019. Find out more about MND Genies here https://www.mndnsw.asn.au/what-we-do/groups/1299-mnd-genies.html

For many people living with MND, appropriate aged care and support which can and should be delivered within a person’s own home, is completely unavailable to them. Many more are struggling to even achieve a fundamental level of support. This is unacceptable. The current Royal Commission into Aged Care in Australia has primarily focussed on the experience of older Australians in residential settings. This only represents part of the substandard care older people are experiencing through our aged care system. Depriving someone of the right to remain living in their own home, simply because of an unavailability of in home care packages is also substandard care. Now is the time to add our voices to the discussion and provide a very clear message to the investigators and to the decision makers that people living with MND want, need and expect to access their care, their way in their own homes.You can make a submission or have your voice heard.

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