MND Australia is seeking six commitments from candidates from all side of politics in the lead up to the 2019 Federal Election, to address the urgent need to improve the lives of people living with motor neurone disease.

The six commitments we are calling on candidates to pledge their support:

1. Improvements to aged and disability care

2. Timely access to a full range of assistive technology

3. Development of MND guidelines

4. No cost access to IVF and pre-implantation genetic diagnosis

5. Funding for specialist MND multidisciplinary clinics

6. Increased investment in research

Read the MND Australia 6 steps to improve the lives of people living with MND document

 

 

Tasmanian Government Electricity Concessions: Life Support, and Medical Cooling or Heating

Within Tasmania, the State Government offers the following electricity concession schemes for certain medical conditions:

a. The Life Support Concession; and

b. The Medical Cooling or Heating Concession

About the concessions

Both concessions provide a daily discount to eligible domestic electricity customers who use, or live with someone who:

• uses a life support system; or

• requires cooling or heating to manage a medical condition.

Important: Applicants for either scheme must apply annually, and a medical practitioner must certify the application.

Please see the factsheet or visit here for further details

First Announcement - call for papers

30th International Symposium on ALS/MND

The Motor Neurone Disease Association is pleased to announce the first announcement and call for papers for the 30t International Symposium on ALS/MND that will be held in Perth, Australia on 4-6 December 2019.

Registrations will open in March 2019

Online submissions will open on 6 May 2019

Abstract submission deadline is 5 June 2019

For further details - please visit the Symposium website or see the 'First Announcement 2019'

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

 

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

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