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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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Australia's MND March of Faces Banners are a photographic display of people with motor neurone disease. The MND NSW March of Faces banners are displayed at various MND awareness raising and remembrance events throughout the year. Our MND March of Faces Banner 21 was displayed for the first time during MND Week 2019.

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.

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

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Including MND NSW in your Will

Leaving MND NSW a gift in your Will can make all the difference to people living with motor neurone disease.

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