Building a Consumers Health Voice in Tasmania - Read the latest e-update January 2019

The e-update January 2019 includes:

A call for action: Become a health consumer representative

Consumer Workshop: Collectively, we will put our minds together on Monday 18th February in Campbell Town to build and co-design the organisation and examine the refine core functions; engagement, and first-year priorities. To find out more and how to be involved, please see the following link.

Other News: Transvaginal mesh implants, My Health Record, Implementation Advisory Group

Access the latest e-update January 2019 here.

Associate Professor Peter Crouch talks about the results of the phase 1 clinical trial exploring copper-ATSM as a potential treatment for MND.

To read more - please use the following link to the MND Australia news page on 'Spot light on research: Update on copper-ATSM.

Use the following link to read other "MND stories - Spotlight on MND".

Facts and Figures 2017-18 - Infographic from MND Australia.

State MND Associations provide support and services to enable people impacted by motor by motor neurone disease to live better for longer.

Until there is a cure, there is care!

See below or follow the link for further information on facts and figures 2017-18.

State MND infographic 17-18

 

Join us on Friday, 1st March 2019 at the Launceston Conference Centre for a forum specifically for health and community professionals.

The theme of the forum is 'Navigating MND: Charting a course for health professionals'.

When: 9:30am-4pm, Friday 1st March 2019

Where: Launceston Conference Centre

Please join our Health Professionals This email address is being protected from spambots. You need JavaScript enabled to view it. to find out more.

To RSVP This email address is being protected from spambots. You need JavaScript enabled to view it. or call 03 9830 2122

** Keynote speaker: Dr Helen Castley, Staff specialist in neurology, Royal Hobart Hospital**

Other speakers include MND specialists from Calvary Health Care Bethlehem

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.

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

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

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

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