News - MND Australia

Out now! MND Australia International Research Update, May 2013

Tue, 14 May 2013 00:00:00 -1000

Catch up on the latest MND research happening around the world:

- Progranulin does not improve the prognosis for MND

- Oiling the energy machine is not enough

- A gatekeeper for Riluzole

- Can we fix MND with electrical tape?

- Lost in translation

- Waking up to MND

Read the May 2013 issue of MND_Australia_International Research_Update

MND Week: 5–11 May 2013

Mon, 06 May 2013 00:00:00 -1000

During MND Week we'll share your stories and snippets – remembering loved ones who have died and paying tribute to those Australians who are currently living with MND. We'll also be campaigning for parliamentarians to continue their good work of recent weeks by supporting a fair care system for ALL people with MND.

MND Australia comes second out of 480 charities in Colonial First State Charity Boost

Sat, 04 May 2013 00:00:00 -1000

Thanks to our wonderful Facebook friends and Twitter followers, MND Australia came second (out of 480 charities) in the Colonial First State Charity Boost! We received around 450 votes and will receive $3000. We are so fortunate to have such dedicated supporters. Thank you to everyone who took the time to vote and share the message. Your efforts will help us to support national advocacy, information and awareness to improve the lives of all Australians living with MND. And a massive thank you to Colonial First State: http://www.colonialfirststate.com.au/charity/

MEDIA RELEASE Neurological Alliance Australia welcomes a funded NDIS

Fri, 03 May 2013 00:00:00 -1000

The Neurological Alliance of Australia (NAA) today congratulated all sides of Parliament for their support of a National Disability Insurance Scheme (NDIS) funding model for DisabilityCare Australia.

The planned increase to the Medicare levy will provide certainty to thousands of Australians living with a neurological disability, as well as their carers, family and loved ones, that a better and sustainable assistance model is around the corner.

Carol Birks, Chairman of the Alliance, said the agreement on a way forward to fund DisabilityCare Australia is a landmark decision for Australian politics.

“I think many would agree there is no perfect way to raise the funds needed for the NDIS but I’m sure all of us would agree we have to raise the funds somehow,” Ms Birks said.

“This is the most important reform ever to come to disability services in Australia and we need to get it right. To do that we need guaranteed funding to move forward with assurance and security.”

There are more than 500,000 Australians currently living with a neurological disability. Many of these conditions are progressive and will worsen over time resulting in the need for early intervention and flexible and timely care options and supports to maintain the best quality of life possible.

Ms Birks said the Alliance is optimistic that DisabilityCare Australia will meet these needs in the future.

“There are some truly inspirational people living with a neurological condition across the country who just want the opportunity to live their life to the fullest,” Ms Birks said.

“We are hopeful that the NDIS and DisabilityCare Australia will give people, their carers and their families the support they need to maintain independence and to make their goals a reality.”

Ms Birks said the Neurological Alliance commends all sides of politics for their support of the NDIS and the increased Medicare levy.

“Make no mistake, with continued bipartisan support throughout the election period, the landscape for people with a disability in Australia will change for the better and we are proud to be part of this movement.”

Media Contact:

About the NAA

The Neurological Alliance Australia (NAA) is an alliance of national not-for-profit peak organisations representing adults and children living with progressive neurological or neuromuscular diseases in Australia.

It consists of:

Alzheimer’s Australia - Brain Injury Australia - Friedreich Ataxia Research Association Australasia -

Huntington’s Australia - MND Australia - Multiple Sclerosis Australia - Muscular Dystrophy Australia - Muscular Dystrophy Foundation - Parkinson’s Australia - Spinal Muscular Atrophy Australia

Submit your abstract for the Allied Professionals Forum in Milan now!

Tue, 30 Apr 2013 00:00:00 -1000

The International Symposium and International Alliance of ALS/MND Associations are hosting a one-day Allied Professionals Forum (APF) in Milan, Italy on 5 December 2013.

This seminar, specifically for allied health and social care professionals, will be held between the International Alliance meeting (3-4 December) and the International Symposium on ALS/MND (6-8 December).

The aim of the APF is to foster the exchange of information about good practice and to facilitate the highest standard of care for people with ALS/MND/SLA and their carers. We are not asking only for studies, but for the hands-on work we all do in supporting people living with ALS/MND/SLA. We try, review, talk and observe as we implement changes to the way we work, and see the outcomes for our patients. This is the practice based evidence we would like you to share.

With the challenges posed in managing ALS/MND/SLA, the programme committee is particularly interested in receiving abstracts which:

demonstrate practical management strategies
provide opportunities to reflect on options and solutions
stimulate understanding and learning, and the ability to translate this into practice
reflect international differences and similarities in care management

CALL FOR ABSTRACTS
Abstract submission closes on 1 June 2013.

For more information and to submit you abstract download the abstract submission form here

Programme Committee

Steve Bell - MND Association, England, Wales and Northern Ireland – Co-chair
Rodney Harris - MND Victoria, Australia – Co-chair
Carol Birks - MND Australia
Sara Feldman - ALS Hope Foundation
Christian Lunetta - AISLA Onlus
Evy Reviers - ALS Belgium

Travel Grants for researchers and health professionals

Thu, 04 Apr 2013 00:00:00 -1000

Call for Applications

The Les Brookes Travel Fellowship and Nina Buscombe Awards 2013

The Les Brookes Travel Fellowship is awarded in memory of the late Les Brookes. The Fellowship is funded by the Susie Harris Memorial Fund and managed by MND Australia. It is intended to provide funds for attendance at a combination of overseas endeavours that must include the International Symposium on ALS/MND, in addition to visiting a laboratory, hospital or care centre for training in new techniques, knowledge or conduct of collaborative research valuable for motor neurone disease. The Fellowship aims to promote overseas activities that will enhance the quality of services, management or research for people living with motor neurone disease.

Eligibility

All people with an interest in motor neurone disease may apply. Part of the travel funds must be used to attend the 24th International Symposium on ALS/MND in Milan Italy. Applicants must be a presenting author of a paper or poster at the conference. Applicants must agree to write and present a formal report on their attendance at the approved overseas activities, with particular emphasis on the impact on people living with motor neurone disease. Read more ....

Applications for the Les Brookes Travel Fellowship are now closed

“Nina’s” are awarded to celebrate the contribution and commitment demonstrated by Nina
Buscombe to the improvement of services, management and research for people with motor
neurone disease. The Award is presented and administered by MND Victoria. It is intended
to provide funds for attendance at training courses, conferences or seminars within Australia
or overseas.

Applications close on 24 May 2013

Eligibility
All people with an interest in motor neurone disease may apply. Only two applicants from any one institution or employer will be eligible for consideration. Where more than two applications are received they will be returned for determination by the institution or employer.

Application of Funds
The Award may be used to subsidise travel, attendance fees, or other costs associated with attending the event. Read more .....

Information Evenings for people recently diagnosed with MND

Thu, 28 Mar 2013 00:00:00 -1000

and their family and friends are held regularly in NSW, Victoria and Queensland.

Information evenings for people who are newly diagnosed with motor neurone disease ensure that help is available at a time when many questions need to be answered. During these informal evenings, people who have been recently diagnosed with motor neurone disease, and their family and friends, are provided with information about motor neurone disease.

Information evenings provide the opportunity for you to ask questions about motor neurone disease and to meet others in a similar situation.

The program includess:

an overview of motor neurone disease
information about living with motor neurone disease
information about support services available from the MND Association and in the community.

Upcoming meetings:

Sydney - Tuesday 16 April at MND NSW, Victoria Rd, Gladesville from 6.30pm to 8.30pm

Brisbane - Wednesday 24 April at Royal Brisbane & Women’s Hospital from 6 to 8pm

Melbourne - Monday 13 May at MND Victoria, 265 Canterbury Road, Canterbury from 7 to 9pm

NDIS Update

Wed, 27 Mar 2013 00:00:00 -1000

Great news - the NDIS Bill passed through Parliament on 21 March 2013 making the NDIS a reality!

Federal parliament unanimously demonstrated their commitment to the NDIS and every MP stood up to show their support for this reform.

We thank everyone who got involved in the NDIS campaign - without your advocacy, support and energy it would not have happened!

The introduction of the NDIS, or DisabilityCare Australia as it will be called, has the potential to transform the lives of people living with MND who are diagnosed when aged 64 or younger.

The age limit of 65 years for NDIS eligibility is now confirmed within the legislation. The task is now to ensure that people diagnosed with MND when over the pension age are not disadvantaged compared with NDIS participants.

MND Australia welcomes the changes to the legislation to ensure that people who need early intervention therapies and supports, including those diagnosed with degenerative conditions such as MND, can access the scheme. Significantly, as participants, the legislation now indicates that these people will be able to choose to remain in the scheme when they turn 65.

We note that in Minister Macklin’s press release of 13 March, the following commitment is given: ‘The NDIS will complement the aged care system to ensure we are delivering a cohesive system that gives people with disability, older people, their families and carers, the support they need.’ It is of critical importance to people living with MND how the term ‘complement’ will operate in action.

The amendments to the NDIS legislation are in response to feedback from, and consultation with, many individuals and organisations including MND Australia, state MND Associations and members of the Neurological Alliance of Australia (NAA). Go to the submission and hearings page on this website to see the extensive feedback and input that MND Australia, state MND Associations and NAA have provided to date.

We need to ensure that all people living with MND will be able to access services to meet their needs no matter how old they are or which system funds the service.

We have argued in submissions and before the Senate Committee on Community Affairs that people with MND could be adequately supported if the services funded or provided through the aged care system could be topped up by access to the Scheme. This top-up would purchase support and address needs not capable of being addressed by aged care.

MND Australia has met with several Federal Parliament politicians in the last few weeks to discuss the NDIS and aged care interface and will continue to seek meetings with other key politicians in the lead up to the next federal election and the introduction of the scheme.

Our MND week Call to Action this year will focus the 50% of people with MND who are diagnosed when they are over the pension age of 65. We are hoping that the NDIS will complement the aged care system to ensure a cohesive system that gives people with disability, older people, their families and carers the full range of supports they need when they need them.

Walk to d-Feet MND – Canberra, 24 March

Mon, 18 Feb 2013 00:00:00 -1000

Limber up! The joint MND NSW and MND Australia Walk to d’Feet Motor Neurone Disease is just a week away – Sunday 24 March.

Join us in the nation’s capital to show your support for people touched by MND.

You can walk, run or ride the 5.5km circuit that takes you from the National Exhibition Centre, along RG Menzies Walk to the Carillon and back through the beautiful autumnal gardens.

Gather a group of friends (the four-legged variety is welcome), colleagues and family to enjoy the spirit of the event and help people with MND live better for longer.

More information and online registration: http://www.online.mndnsw.asn.au/products/canberra-24-march-2013-walk-to-d-feet-mnd

You can even set up an Everyday Hero page to help you with fundraising: http://www.everydayhero.com.au/event/Walkact2013

National Disability Insurance Scheme and Aged Care

Wed, 13 Feb 2013 00:00:00 -1000

The needs of people living with rapidly progressive neurological diseases, such as motor neurone disease (MND), cannot be met by existing or traditional aged care services or facilities.

The introduction of a national disability insurance scheme (NDIS) has the potential to transform the lives of people living with MND who are diagnosed when aged 64 or younger. However it has been proposed that the needs of those people who acquire a disability after pension age would be best met by the aged care system.

The crucial issue is then how do people acquiring a disability over age 64 (pension age) access services based on need. MND Australia is working hard to ensure access to needs based care for all people diagnosed with MND no matter what age they are when diagnosed. In all NDIS and Aged Care submissions and discussions we will continue to highlight this issue.

Read the MND Australia Position Statement on Aged Care here

Read MND Australia submission to the National Disability Insurance Scheme Bill 2012 - submission 443 - and see what MND Australia has to say.

NDIS POSITION STATEMENT

The introduction of a national disability insurance scheme (NDIS) has the potential to transform the lives of people living with motor neurone disease (MND). The proposed NDIS will go a long way in providing an appropriate support structure for people in need of urgent and complex support services following a diagnosis with a rapidly progressive neurodegenerative disease such as MND.

The proposed NDIS recognises the need for:

early intervention for people with progressive degenerative disease
an assessment process that can anticipate changing need
effective protocols for timely and smooth referrals to and from the different sectors

The crucial issue that must be addressed is eligibility and access to services based on need not age. It has been proposed by the Productivity Commission in their Disability Care and Support Inquiry Report dated 31 July 2011 that the needs of those people who acquire a disabiligy after the pension age would be best met by the aged care system. This is not the case. The needs of people living with rapidly progressive neurological diseases such as MND cannot be met by existing or traditional aged care services or facilities.

MND is not a disease related to ageing but many people are diagnosed when they are over the pension age. People diagnosed with MND aged over the pension age will need services from both disability and aged care systems to address changing and complex needs related to their disability and age to ensure their quality of life. A person diagnosed with MND aged 66 must be able to access the same level of service as those diagnosed aged 64 no matter which system funds the services. A rapid response to service provision from a range of services based on the needs of the individual not their age is imperative.

About 40% of people living with MND in Australia and currently registered with a MND Association were diagnosed when they were aged 65 or older.

MND Australia believes:

A NDIS offers a solution to the chronic unmet needs for early intervention and lifetime care and support services
People diagnosed with rapidly progressive neurological disease must be able to access disability services as soon as a need arises irrespective of where they live or their age
MND associations will play a vital role within a NDIS with respect to specialist MND information and education and expert individualised and personalised support and services

MND Australia calls for:

The provision of safety net flexibility for people diagnosed with MND and other rapidly progressive neurological diseases when they are over the pension age within the proposed NDIS legislation to ensure needs based care
The MND community to support this scheme and to take action to spread the word in their community and to their government representatives
Bipartisan government support and commitment to the introduction of the NDIS so that this significant social change can take place to benefit all
Bipartisan agreement that a scheme such as the NDIS requires adequate and sustainable funding that is not dependant on a surplus from year to year.

Join the campaign and have your say about the development of the NDIS