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.
Neurology service inequities hit a nerve
The Examiner has published an article about the inequities of neurological services across Tasmania. MND Tasmania has been part of the Neurological Alliance of Tasmania (NAT) since its inception in 2006. Since that time, we have been lobbying for improved neurological services for people with neurological conditions including MND in the State.
Edaravone - One month on from the FDA Announcement
The MND Research Blog have posted an update on where things are at with Edaravone in Australia
Click here to read the article
There is also an updated FAQ sheet available from MND Australia below
North West Support Group
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
MND in Tasmanian Parliament
Guy Barnett presented a motion regarding MND to parliament which was successfully moved.
Please click here to read the full Notice of Motion
Have your say - Disability Framework for Action for 2018-2020
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.
Familial MND families: we want to hear from you!
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).
Stories to support disease research
A Legana man has authored an anthology of stories which will support a cause that is close to his heart. David Brelsford was impacted by motor neurone disease when a friend died from the disease 16 years ago. David's book Crossroads can be purchased at Petrarch's Bookshop, located at 89 Brisbane Street Launceston, for $16.95.
Click here to read the full news article on the Examiner website
Support Groups
Northern Support Group
The Northern Support Group invites all members and supporters of MND Tasmania to its meetings. The Ravenswood facility is comfortable and suitable to use as a stopover venue for a day trip.
WHEN:
Meetings are held from 11 AM to 1 PM on the fourth Monday of every second month
Meeting dates 2017: March 27, May 29, July 24, September 25, November TBA
WHERE:
The Ravenswood Community Health Centre, 39 – 41 Lambert St., Ravenswood (excellent accessible comfortable facilities and parking)
The contact person for this group is Libby Cohen who may be contacted at 1800 806 632 (message) or email This email address is being protected from spambots. You need JavaScript enabled to view it.
Southern Support Group
No Southern Support Group meetings are scheduled until further notice. Please note that members from any part of the State are welcome to attend the Northern Support Group meetings in Launceston.
