Building a Consumers Health Voice in Tasmania

The Tasmanian Health Consumer Organisation is pleased to announce that work has commenced on building a new health consumer organisation for Tasmania.

The aim of this organisation is to create an independent health consumer voice in Tasmania.

The welcome to Tasmanian e-update - November 2018 - provides further details on:

1. Keeping you informed on what's happening as they build and co-design a health consumer organisation in Tasmania

- Introducing the new Executive Office: Bruce Levett

- Introducing the Implementation Advisory Group

2. Request for feedback and comments as they begin this journey

- What's next: Get involved by completing the Survey Monkey link (or emailing your preferences to the email contact) in the e-update.

Does perceived stigma influence psychological distress in individuals with motor neurone disease?

Take part in an international study seeking to find out if there is a relationship between levels of stigma and levels of psychological distress experienced by individuals with a diagnosis of motor neurone disease.

To find out more - the link for the survey can be found here

Second annual Walk to D'feet MND Tasmania - Sunday 21st October 2018 at the Domain Athletics Centre in Hobart

The second annual Walk to D'feet MND Tasmania will be held on Sunday 21st October 2018 at the Domain Athletics Centre in Hobart.

Walk a lap of the track or run the full 5km. Bring the family along, activities for the kids, raffle, bbq and more! Gates open at 9.30 for a 10am start.

All funds raised will stay in Tasmania to care and support those individuals and their families currently living with MND.

Register now

https://www.mycause.com.au/events/walktodfeetmndtasmania

#nevergiveup

Aged Care is failing people with motor neurone disease

Motor Neurone Disease Australia has launched a campaign to call on the Government to make access to support services fair for ALL people diagnosed with motor neurone disease (MND).

People diagnosed with MND aged 65 or over are being forced to rely on unsuitable Aged Care services for their care and support needs, despite the fact they have the same needs as a person diagnosed under the age of 65.

MND is not age related.....

For further information, visit 

http://seniorau.com.au/8118-aged-care-is-failing-people-with-motor-neurone-disease

MND Clinical Trial Update

Clinical trial information has been updated on the MND Australia website.

As the MND community in Australia is relatively small, participants may need to travel to interstate centres if they are eligible to participate in a trial.

Two phase 2 trials, TEALS (Tecfidera in amyotrophic lateral sclerosis) and FORTITUDE-ALS are now actively recruiting. People can contact their neurologist or MND Advisor to discuss.

Clinical trials for Triumeq and Cu(11) ATSM trials have now closed.

For further information, visit https://www.mndaust.asn.au/Discover-our-research/Latest-research/Clinical-trials.aspx

Make a Donation

Your passion to make a difference in the world of Motor Neurone Disease (MND) is encouraging.  We are grateful for your support and the board of MND Tasmania will accept any donation with gratitude.

Donate Now

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Sean Dorney's journey with Motor Neurone Disease

Sean Dorney left the ABC in 2014 after 40 years of award-winning reporting from the Pacific region.

He's facing a new challenge now — Sean has been recently diagnosed with Motor Neurone Disease.

Please click here to go to the article on the ABC website