News - MND Australia

Family studies and genetic analysis of MND

Fri, 20 Aug 2010 00:00:00 -1000

The MND research team at the Northcott Neuroscience Laboratory at the ANZAC Research Institute in Sydney has recruited MND families for over 10 years. They are actively recruiting MND families and family members for their research - read more...

Major parties commit to National Disability Insurance Scheme

Mon, 16 Aug 2010 00:00:00 -1000

The National Disability and Carer Alliance has issued a media release highlighting that the three major parties have confirmed they will commit to major reform of the disability sector in their next term if elected, including supporting the introduction of a National Disability Insurance Scheme.

The National Disability and Carer Alliance was formed last year by National Disability Services, Carers Australia and the National Federation of Disability Organisations to pursue the structural and systemic changes necessary to improve the lives of people with a disability, their families and carers in this country. The Alliance is united in strong support for a National Disability Insurance Scheme.

Disability Care and Support Inquiry

Mon, 16 Aug 2010 00:00:00 -1000

MND Australia has made a submission to the Productivity Commision's Disability Care and support inquiry.

MND Australia welcomes this once in a lifetime opportunity to change the lives of people living with a disability in Australia. For too long people living with progressive neurological diseases such as motor neurone disease (MND) and their families have not received the support they need to maintain their independence, social inclusion and quality of life. For too long people with MND and their families have had to wait for an assessment, wait for services to commence and then wait for an increase in services to meet their increasing needs. The complexity of the current system has for too long precluded access, equity, self determination, efficiency and coordination.

A National Disability Insurance Scheme represents the opportunity to make reforms and systemic changes to ensure that every person who has a disability, either from birth or acquired via disease or injury, will be entitled to care and support to meet their needs with no restrictions based on the age of onset. Read more

Caring for Older Australians

Thu, 05 Aug 2010 00:00:00 -1000

Productivity Commision Inquiry - MND Australia has sent a submission on behalf of people living with MND highlighting that people living with MND require needs based care no matter how old they are. Read more

Voice your views on MND

Tue, 03 Aug 2010 00:00:00 -1000

Amanda Dean, from Exeter University in the UK, is looking for people with MND in Australia to participate in her PhD project to voice their views on the disease. This project plans to develop a new understanding of how people living with MND can maintain or increase health related quality of life.

Apply now for grants for research into MND in 2011

Mon, 26 Jul 2010 00:00:00 -1000

Closing date: Friday, 27 August 2010

Researchers working in Australia in fields that are relevant to motor neurone disease are invited to apply for funding to support research in the calendar year 2011.

Proposals must reach the Executive Officer Research by Friday, 27 August 2010 in order to be considered in the funding allocation for 2011.

Late applications will not be considered. In general, the proposal should be consistent with the standards of the National Health and Medical Research Council (NHMRC).

Funding decisions will be made by the Institute's Research Committee at a Grants Allocation Meeting to be held on 25 October 2010.

Research grants allocated by the MND Research Institute of Australia are mostly grants-in-aid and postdoctoral fellowships.

New website for health and community care professionals launched by MND Australia

Thu, 22 Jul 2010 00:00:00 -1000

Helping People Living with Motor Neurone Disease to Live Better for Longer.

www.mndcare.net.au is a new ‘one-stop shop' website about motor neurone disease for primary, allied, palliative, aged, disability and community care professionals. No matter where a professional works MNDcare provides access to latest evidence based and best practice MND symptom management and support information. The website includes state specific referral pathways to assist in identifying providers and services to meet the identified needs of patients with MND. The aim of the website is to facilitate and promote best practice coordinated, multidisciplinary MND care for all people with a diagnosis of MND in Australia.

For more details click here

Latest research update now available

Thu, 01 Jul 2010 00:00:00 -1000

The June International MND Research update and MNDRIA newsletter now available.

Global Day - Walk to D'Feet MND

Sun, 27 Jun 2010 00:00:00 -1000

The second National Capital Walk to d'feet MND in Canberra to mark Global Day on Sun 27 June was a great success. Around 300 people plus dogs and an Alpacca gathered at the Captain Cook Globe to walk around Lake Burley Griffin on a beautiful cold but sunny Canberra morning.

Made the front page of the Canberra Times - online and print! http://www.canberratimes.com.au/news/local/news/general/taking-strides-to-help-those-who-cant/1869952.aspx

Many 'heros' have helped to raise nearly $20,000 in sponsorships - a fantastic effort. We thank everyone who registered, those who spoke to the media in Canberra and our 'hero's' for their support and their help in making theday such a success.

This event was jointly run by MND NSW and MND Australia.

Global Day acknowledged at Parliament House, Canberra on Monday 21 June

Thu, 24 Jun 2010 00:00:00 -1000

Politicians wore cornflowers during question time and Senator Guy Barnett hosted a Parliamentary Afternoon Tea to mark Global Day in Australia on Monday 21 June. Over 50 people attended the afternoon tea and following a very warm welcoming address from Senator Guy Barnett MND Australia gave presentations on Advances in Care and Research in Australia and introduced a new website for health and community care professionals - more details coming soon! Dr Sue O'Reilly gave a personal perspective of living with MND and president Ralph Warren gave the vote of thanks.

Senator Guy Barnett moved a motion in the Senate which was duly passed the next day:

HEALTH-MOTOR NEURONE DISEASE GLOBAL DAY

Senator Barnett, pursuant to notice of motion not objected to as a formal motion, moved general business notice of motion no. 829-That the Senate-

(a) notes that:

(i) motor neurone disease (MND) Global Day on 21 June 2010 represents an important opportunity to acknowledge those around the world affected by MND,

(ii) in Australia alone, more than 1 400 people have MND and the disease takes the life of more than 10 Australians every week,

(iii) there is no known cause in 90 per cent of cases, no cure and no effective treatment for MND, and

(iv) the most pressing need for those affected by MND and their families includes easy and timely access to appropriate care and support, including access to aids, equipment and assistance with basic daily living such as mobility, communication, feeding and breathing to maintain independence and quality of life; and

(b) calls on the Government to continue its funding for MND research and improving health and disability services for all those affected.

Question put and passed.