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.

The medication riluzole, which is often prescribed to people with motor neurone disease, is now available in liquid form under the Pharmaceutical Benefits Scheme (PBS). Riluzole is anti-glutamate medication that appears to block the release of glutamate from nerve cells (neurones) and for people with the most common forms of MND it probably prolongs median survival by two to three months (median is the mid-point – half those taking riluzole have survival prolonged by more than two to three months). 

Carer Gateway provides information about the services and support available for people who care for someone with a disability, chronic illness, dementia, mental illness or who are frail aged. This service is available via www.carergateway.gov.au  or by phone 1800 422 737 Monday to Friday, from 8am to 6pm. Educational resources recently published on Carer Gateway include Dealing with stressEffective communications techniques and Recharge and reconnect 

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