The US Food and Drugs Administration (FDA) has approved the drug edaravone for the treatment of MND. MND Australia has prepared a fact sheet to explain what this approval means for people living with MND in Australia.

You can download the fact sheet here

 

 

The Tasmanian Government is developing a new Disability Framework for Action for 2018-2020.

The Disability Framework for Action 2018-2020 will set out what Tasmanian Government agencies will do to support people with disability to participate equally in all aspects of community life.

We want to know what you see as the priorities for making Tasmania a better place for people with disability.

The public consultation period is now open and will continue until 9 June 2017.

You can participate via on-line survey, by e-mail, by post or in person at public forums to be held in major centres.  Follow this link http://www.dpac.tas.gov.au/divisions/csr for more details.

Please contact us if your organisation would like to arrange to meet with the consultation team. We can discuss the review with you or your organisation at a time that best suits you. 

For further information e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. or call 6232 7132.

The Kirk Dicker Challenge is on the 13th and 14th of March 2016.  The event is a crazy craft ocean race and swim organised by the Boat Harbour Beach Surf Life Saving Club to raise money for support and research into MND. Click the image below for details.

Kirk Dicker Challenge 2016

The first Deloitte Access Economics Report on the Economic analysis of motor neurone disease (MND) in Australia reveals that the total cost of MND in Australia was $2.37 billion in 2015, comprising $430.9 million in economic costs and $1.94 billion in burden of disease costs. The report, commissioned by MND Australia, was launched at Parliament House, Canberra on 24 February 2016.

 

Cost of MND Infographic

The first Deloitte Access Economics Report on the Economic analysis of motor neurone disease (MND) in Australia reveals that the total cost of MND in Australia was $2.37 billion in 2015, comprising $430.9 million in economic costs and $1.94 billion in burden of disease costs. The report, commissioned by MND Australia, will be launched at Parliament House, Canberra on 24 February 2016.

 

Cost of MND Infographic

MND Australia research updates can be downloaded below:

December 2015

September 2015

December 2014

June 2014

December 2013

May 2013

March 2013

June 2012

March 2012

 

The MND Research Institute of Australia (MNDRIA) newsletter Advance can be downloaded below:

June 2014

The full roll-out of the NDIS in Tasmania has been announced.  It will be an incremental roll-out staged over the next few years.  MND Tasmania continues to work with the NDIA to ensure the voice of those with MND in Tasmania is heard.

Please click here to read the full stakeholder letter received by MND Tasmania.

Betta Milk Health Achievement Award Semi-Finalist

 

We're proud to announce that MND Tasmania is a semi-finalist in the Betta Milk "Make it Betta" Health Achievement Award category of the Community Achievement Awards.

Lady Sallie Ferrall

 

People who have a long association with MND in Tasmania were saddened to hear of the death of the Patron of MND Tasmania, Lady Sallie Ferrall, on September 10. Lady Ferrall was an active Patron of the Association, hosting the memorable annual Christmas Parties in her gardens at Quamby and Elphin House until recent years.

Her proactive support for people living with MND in Tasmania started over 30 years ago when her first husband, John Barnett, had MND. She initiated informal meetings and networks which resulted in the first public meeting at her home at Quamby on October 15 1985 to consider the formation of a society for people with MND in Tasmania.

After the incorporation of The MND Association of Tasmania on December 9 1986, Sallie was the Fundraising and Publicity Officer on the 11 member Committee. Another memorable milestone occurred on March 17 1996 when one of Sallie and John's four sons, Guy, was elected President of The MND Association of Tasmania.

We are very thankful for Lady Ferrall and her vibrant personality, passion and drive which resulted in the birth, growth and development of an organisation to support people and their families living with MND in Tasmania. Our sympathy is with her sons and their families at this time.