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.
We need your help!
We are looking for volunteers to participate in collections and raising awareness on as many streets around the State as possible. If you would like to volunteer or would like to know who is fundraising in your area please contact the Fundraising Coordinator using the details below.
Note: Due to certain legal requirements you must be in possession of the required paperwork to collect monies on public streets, which can only be obtained by using the contact details below.
We have merchandise boxes with pens, cornflowers and wristbands, for placement in businesses and workplaces.
Are you able to help or do you know someone that can?
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.
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.
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.
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
The Ravenswood Community Health Centre, 39 – 41 Lambert St., Ravenswood (excellent accessible comfortable facilities and parking)
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.
Would you or someone you know consider volunteering for one of the following roles?
Northern Support Group coordinator
We are looking for a volunteer who will take on this role for the rest of this year. It involves setting the dates for and attending Support Group meetings, booking the venue and liaising with the people who attend regularly to provide a welcoming environment for people who come along. Mary Erickson and other Board members will assist and support this person
Support MND Tasmania and pre-order your 2017/2018 Entertainment™ books here!
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In Tasmania the Better Access to Palliative Care (BAPC) project is working towards providing the best possible palliative care for people with life- limiting illness, including through developing a Tasmanian Palliative Care Community Charter. The Charter will be an agreement between Tasmanian palliative care service providers and the people of Tasmania about the way in which palliative care is provided in the community.
To ensure that the Charter reflects the views of community members, we are conducting a survey and we would greatly appreciate your input to that. To complete the survey, please click here