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.

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Senator Carol Brown has been working with Carol Birks of MND Australia to ensure that MND Cornflowers will be prominent in the Senate on MND Global Awareness Day, the 21st of June.
 
MND Tasmania supports people living with MND, their families, friends and health workers. There are on average 35-40 people in our Association who have MND at any time and in Tasmania there are on average 10 new diagnoses of MND and 10 deaths due to MND every year. 
 
We are an Association of volunteers which is supported by donations and an MOU with MND Victoria to provide this support. Senator Brown's Cornflower action in the Senate will assist in raising the awareness of the needs of those living with MND.
 
Senator Brown, on behalf of the people who live with MND in Tasmania, we would like to thank you for the support!
 
 
 
 

ILC Tasmania are holding a display of equipment to help at home.

When: Wednesday 28th June 2017 11 am to 12 noon (drop in any time within the hour)

Where: Community Based Support, 24 Sunderland Street, Moonah, Tas, 7009

RSVP encouraged: Phone ILC Tas on 1300 885 886 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

Please click here to download the flyer

You can download a map with directions here

There is a new MND support group operating in the North West of Tasmania, you can access their Facebook page here

The Advocate newspaper recently published an article on the support group which you can access here

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

 

 

Guy Barnett presented a motion regarding MND to parliament which was successfully moved.

Please click here to read the full Notice of Motion

 

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.

Around 10% of people with MND have familial MND, and two-thirds of these individuals will carry a genetic fault in a currently known MND gene, such as C9orf72 and SOD1. Once the genetic change causing MND in the family is identified, relatives can decide whether to have genetic testing to predict whether they are at risk of developing MND in future. Little is known about how individuals from these families decide whether to have genetic counselling, have genetic testing and undergo reproductive options. In fact, no Australian studies have been performed to date. 

If you are from a family with familial MND and there is a known genetic fault in the family, you are invited to participate in an interview by telephone to discuss your experiences of familial MND, receiving genetic information, and any subsequent decisions made such as whether to speak to a genetic counsellor or have genetic testing. We are interested in hearing a variety of experiences, both positive and negative, old and new. It is hoped that information from this research can guide the MND care and genetic counselling community on best practice guidelines for familial MND.

Multiple family members are welcome to contribute by having an individual interview.

If you would like to participate or would like more information, please contact Ashley Crook by email (This email address is being protected from spambots. You need JavaScript enabled to view it.) or phone (02 9812 3720). This is a 12-month project funded by the MND Research Institute of Australia (MNDRIA) Graham Lang Memorial MND Research Grant 2017 that has been approved by the Human Research Ethics Committee, Macquarie University (Approval no. 5201600879).

When the Hobart Hurricanes looked like getting flogged by the Melbourne Renegades, Brayden Hayes posted on Facebook that if the Hurricanes could come back and win he would run from Hobart to Burnie for charity, in his undies. When the Hurricanes made a massive come back and won everyone was shocked, including Brayden who decided to honor his post and run for a cause!

Brayden is donating all money raised to two causes close to him - Diddy's Day Out and Motor Neurone Disease (MND) Tasmania.

MND Tasmania wishes Brayden all the best for his run and thanks him and his team for their support.

UPDATE: He made it! Brayden successfully completed the 325k run from Hobart to Burnie. What an amazing effort, congratulations to Brayden and his support team and a massive thanks from all at MND Tasmania.

Click here to read an article in the Advocate Newspaper about Brayden's Run for a Cause

Click here to follow Brayden's journey on the Run for a Cause Facebook page

Click here if you would like to donate