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MND Australia's bimonthly newsletter features updates about national advocacy, information, awareness and research activities that impact the MND community.
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Dear <<First Name>>

Collaboration is vital to ensure the best outcomes for people living with MND and their families and to move us closer to an effective treatment to stop MND. The MND Association network in Australia takes a lead role in supporting and developing collaborations nationally and internationally.

Care, Communication, Collaboration were the themes of the 8th National MND Conference, which was hosted by MND Victoria. More than 280 delegates, key note speakers and presenters clearly demonstrated their commitment to developing and providing the best care for people living with MND, improving communication, and forging care and research collaborations.

The Australian MND Registry steering committee meeting and AGM were held to coincide with the conference. Progress has been made with the Registry this year including reformatting the database, a new website, preparing a paper for publication, forging links with New Zealand and engaging with researchers nationally and internationally to promote collection of consistent, core data sets with options for customisation.

The third meeting of the Pan Asian Consortia for the Treatment and Research of ALS (PACTALS) was held in Kuala Lumpur on 20 August. Attendees focused on ways forward in developing a shared regional ALS/MND registry. Presentations from Japan and Australia highlighted the value of patient registries and the opportunities they provide for research and clinical trial development.

Following attendance at the PACTALS meeting, in my capacity as Chairwoman of the International Alliance of ALS/MND Associations I also visited Alliance member associations in Malaysia, South Korea and Taiwan. I last visited Malaysia three years ago to share resources and experience with a group of people interested in forming an MND association. Helping to facilitate collaboration between a newly formed Indonesian association and, a now well established, MND Association of Malaysia, was a highlight of the trip.

Carol Birks
National Executive Director



8th National MND Conference – 12 September, Melbourne

More than 280 delegates from State MND Associations, allied health, community care and the broader MND community attended the 8th National MND Conference.


Keynote speaker, Dr Jim Howe, a neurologist from Calvary Health Care Bethlehem shared his 38 years of experience in caring for people living with MND with a focus on the importance of expert multidisciplinary care. Speaking using assistive technology, Duncan Bayly together with his wife, Kat, provided a personal insight into living with MND. In conclusion, Duncan had this advice, “For me living well with MND is a bit like the themes to this conference. Take full advantage of the care and supports available to you. Collaborate and communicate with those supports to build a platform on which you can achieve your goals."

Each of the sessions on care, collaboration and communication featured several presentations from experts of different vocational backgrounds, providing a diverse and well-rounded program. Between each session delegates had the opportunity to network, view posters on different aspects of MND care and speak with trade display exhibitors. Read the conference overview and view the presentations.

 
"Very informative and well-presented conference, my knowledge of referral pathways and understanding the nature of MND has increased exponentially!"
 

Huge boosts to MND research   

The MND Research Institute of Australia (MNDRIA) has recently received three substantial gifts for the 2017 funding round. We would like to thank MND Western Australia and their supporters for donating $82,000. We are also grateful to the Country Women's Association of WA for a very generous donation of $60,000. Congratulations and thanks to MND and Me Foundation for raising a massive $130,000 to fund two research grants – the Fat Rabbit MND Research Grant and the MND and Me Foundation Research Grant to facilitate development of treatments for sporadic MND. Every dollar of these donations will be used to fund Australia's best MND researchers with the greatest chance of changing the future of MND.

Betty Laidlaw MND Research Prize

In a few days' time applications will close for the Betty Laidlaw MND Research Prize. The Prize will be a grant of $250,000 to be awarded to an outstanding mid-career researcher for an innovative 12-month project to advance the understanding of classical MND with a clear potential for effective treatments. This grant acknowledges the generosity of John and Betty Laidlaw who have contributed the funds. Betty Laidlaw has been living in Melbourne with MND for 35 years. 

Spotlight on MND NSW 

There are still two great Walk to d'Feet MND events to attend in NSW in 2016.  As the name suggests, Walk to d'Feet MND reflects the hope and inspiration this special day provides to the MND community. Teams made up of family, friends, colleagues and individuals living with MND, regardless of age or fitness levels will participate to raise funds and awareness for research and support for people impacted by MND.  Walk to d’Feet MND Wagga Wagga on October 16 has a new start venue of Apex Park, Lake Street, Lake Albert. Walk to d’ Feet MND Sydney November 6 will again be held at  Blaxland Riverside Park. Don’t miss out on the pre-registration discounts! Register today: www.mndnsw.asn.au

Connect with MND experts

'MND Connect' allows people from different parts of the MND community to meet under one roof. Find out about the latest MND research – from gene discovery to clinical trials, and the current status on stem cell research. This event is organised by MND Australia along with Shyuan Ngo and Frederik Steyn from the Queensland Brain Institute, with support from VWR, MND and Me Foundation, and MND Queensland. 'MND Connect' will be held on Saturday 22 October at the Queensland Brain Institute. Download the program and register 

Record number of grant proposals

87 grants-in-aid proposals and 17 postdoctoral research fellowship applications were submitted for the MNDRIA 2017 funding round. The applications are currently being scrutinised by a panel of eminent clinicians and scientists to ensure that our generous donors' gifts fund only the best research. We look forward to announcing the recipients in October.

MNDcare newsletter

The August issue of the MNDcare newsletter features – the Lighthouse Project research update, NICE Quality Standard for MND and an MND Special Interest Group (SIG) update.


 

International Research Update

Check out the September MND Australia International Research Update to catch up on the latest MND research from around the world.

MND 'red flags' tool at GP16

MND Australia has ramped up engagement with health professionals this year. All 1200 delegates attending the GP16 Conference for general practitioners will receive a 'red flags' diagnostic tool Painless, progressive weakness – Could this be motor neurone disease? as well as an 8-page supplement from Australian Doctor about how to treat MND. 

ALS Quest goes mobile

Would you like to help researchers understand the cause of MND? Have you completed ALS Quest? ALS Quest is an online questionnaire to find out how our environments affect the likelihood of developing MND. To get the most accurate data possible, the researchers need people with and without MND to complete the questionnaire. ALS Quest is now accessible from mobile devices so it's easier to get involved.

Did you know ...
In 2015, informal MND care costs in Australia were $68.5 million, or $32,728 per person with MND. 


Deloitte Access Economics 2015, Economic analysis of MND in Australia 

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MND Australia
PO Box 430, North Sydney NSW 2059
Australia
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MND Australia · PO Box 430 · North Sydney, NSW 2059 · Australia