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World Parkinson's Day
The 11th of April 2017 marks 200 years since Dr James Parkinson's, a UK physician, described Parkinson's in his paper “An Essay on the
Shaking Palsy”. In that 200 years we have not yet determined what causes Parkinson's, have no diagnostic test to assist in its’ diagnosis or
have any treatments that will slow, stop, reverse or prevent the condition.
This World Parkinson's Day the global Parkinson’s community is working together to raise awareness about the condition. More than 170 countries are participating to make this one of the largest global campaigns ever seen in the health charity sector. Parkinson's organisations from every continent will be supporting a social media campaign #UniteForParkinsons and encouraging people impacted by Parkinson's to post a photo or a message using the #UniteForParkinsons hashtag and logo.
Steve Sant, CEO Parkinson's Australia said “this is the first for the global Parkinson's community and for Parkinson's Australia, we are all working to the same goal to raise awareness about this debilitating condition and to encourage Governments to invest in research and better care and support for those in our community living with Parkinson's”.
“Parkinson's Australia is calling on State and Federal Governments to invest in keeping people well and out of hospitals and aged care facilities by funding community based Parkinson's Specialist Nurses who work with Parkinson's patients and their families ensure that they receive the care they need”
“We would also like to see greater investment in research into Parkinson's. Australia has some of the best researchers in the world in this area and we know that for every $1 invested in research there is a return to the community of more than $3.
Parkinson's Australia will be tweeting and posting to Facebook on the 10-12 April so please re-tweet and share our posts far and wide - we have some exciting photos to share with you on the day.
Pictured (L)Parkinson Australia meeting with the Hon Malcolm Turnbull, Prime Minister of Australia, and (R) Bill Shorten, Leader of the Opposition.
Launch of Neurlogical Alliance Australia NDIS position paper
Ten national peak not-for-profit health organisations, making up the Neurological Alliance Australia (NAA), are calling for the National Disability Insurance Scheme (NDIS) to transform the lives of over 850,000 Australians living with progressive neurological or neuromuscular conditions that have no known cause and no cure, outlined in a Joint Position Paper, People with progressive neurodegenerative diseases in the NDIS. Dealing with progressive neurological or neuromuscular conditions comes at an annual cost of almost $30 billion to the Australian economy.
The NAA believes that the NDIS has the ability to transform the lives of people living with progressive neurodegenerative diseases and has promoted
and supported the Scheme since its inception. To date, some NDIS participants have received plans that have had positive, life-changing impacts
on their lives, however, many others have received insufficient plans that will adversely affect their quality of life and place some at risk
of avoidable hospitalisation. To ensure the best outcomes for people with progressive neurodegenerative diseases under the NDIS, the NAA recommends:
- Improved pre-planning support for people with a progressive neurodegenerative disease;
- NDIS planning sessions that recognise the unique needs of people with a progressive neurodegenerative disease;
- Mandatory inclusion of Coordination of Support in all NDIS plans for people living with a progressive neurodegenerative disease; and
- The needs of people with a progressive neurodegenerative disease be addressed in the Productivity Commission’s upcoming Review of NDIS Costs.
Liz Jackson's powerful film about living with Parkinson's
A powerful new film about living with Parkinson’s will be broadcast on the ABC Monday 21 November at 8.30pm. In this honest and confronting documentary, acclaimed TV journalist Liz Jackson shares her personal story of living with Parkinson’s and how it affects her sense of self and her relationships with her loved ones – her husband, her children and cherished grand-daughter. Liz was beamed into our loungerooms for over two decades with her powerful Four Corners stories. This time, Liz turns the lens on herself to make the most challenging story of her life. Using her formidable compulsion for the truth she courageously explores some big and confronting questions: What does Parkinson’s do to you? Can it be cured or helped? What does it mean for your cognitive abilities? Your sense of self and independence? Your friends and family? Through her investigation she is surprised to discover she is making a story that celebrates the transformative power of love. If you are not able watch the program when it goes to air you can also see it on ABC iview
Parkinson's Australia Community Service Annoucement: Update 6
Parkinson's Australia is proud to be selected as a SBS Foundation partner for 2016/17. Today, for Parkinson's Month, we launch our Community Service Announcement to raise awareness with a simple, yet powerful, message about diagnosis, symptoms and the impact of living with Parkinson's. Thanks to Parkinson's NSW and Parkinson's SA for the wonderful members featured in the project.
Making Parkinson's a Priority during this federal election: Update 5
As far as federal election campaigns go, this year's is a long one. At the halfway point, Parkinson's Australia's media release reminds all parties and candidates to Make Parkinson's a Priority in order to significantly improve the lives of people living with Parkinson's and reduce the $10b economic impact of the disease. Read the media release here.
Our CEO joined with friends as part of the "Neurological Alliance Australia" to call on political parties to commit to better care & support for people with neurological conditions. Representatives pictured from Alzheimer's Australia, Parkinson's Australia, MS Australia and Motor Neurone Disease Australia.
We have also completed a submission to the Medical Reseach Futures Fund (MRFF). The MRFF is the establishment of $20 billion to provide a sustainable
source of funding for vital medical research over the medium to longer term.
Our submission identified that research into Parkinson’s is underfunded in comparison to similar conditions and that Parkinson’s results in a significant cost to the community. Parkinson’s Australia recommended that Medical Research Futures Fund increase and broaden the research currently undertaken in Parkinson’s and Parkinson’s-like conditions (including Lewy Body Dementia, Multiple system atrophy, Progressive Supranuclear Palsy and Corticobasal Syndrome) in Australia. A copy of the submission is available here.
Watch Monica Hall's speech at Parliament House: Update 4
Parkinson's Australia launched Make Parkinson's a Priority Action Framework at Parliament House in Canberra on March 15.
We are pleased to release the fist video from the event. Parliamentarians were visibly moved by the plea from Monica Hall, living with Young Onset Parkinson's, to Make Parkinson's a Priority.
Watch her emotional speech below, or on our YouTube Channel, and please share with your friends and networks.
Parkinson's a Priority: Update 3
Today on World Parkinson's Day (April 11) Steve Sant, CEO Parkinson's Australia, and Janice Rowan, who was diagnosed with Parkinson's five years ago, appeared on Channel 9's Today Extra.
Their appearance on the popular show raised awareness about World Parkinson's Day, highlighted some of the early warning signs and symptoms and launch of the free resource Parkinson's Xplained.
Parkinson's Xplained was created in collaboration with Parkinson's Australia and describes the journey of Janice's diagnosis and understanding the condition. It contains links to additional information and an explanation of specific symptoms, environmental factors, avenues for help including the support services offered by the Parkinson's organisations in each State.
Parkinson's Australia presents a strong message at Parliament House: Update 2
Parkinson's Australia presented a strong message to Make Parkinson's a Priority at Parliament House in Canberra yesterday.
Monica Hall's speech was both moving and educational. Julie Collins MP tweeted, "Listening to the inspirational Monica on living with Parkinson's disease."
Senator Penny Wong tweeted, "Thank you Monica for sharing your experiences and for your courage."
Ann Sudmalis MP, convenor of the Parliamentary Friends of Parkinson's Group, wrote, "I was honoured to launch the Action Framework for Parkinson's Australian Parliament House this morning. Guest speaker, Monica Hall, who has Parkinson’s Disease delivered an inspirational speech and her journey shows that making Parkinson’s a Priority is critical to reducing the impact of this disease which affects so many Australians and their families."
Professor George Mellick gave a very convincing argument as to why the government should invest in Australian Parkinson's research and the presence of guests from the Garvan Institute of Medical Research and Shake It Up Australia Foundation showed how unified the Parkinson's community is.
Victor McConvey, Parkinson's Clinical Nurse Consultant Parkinson's Victoria used the wealth of his experience in both the UK and Australia to show that Parkinson's nurses provide practical and much-needed support to people with Parkinson's and their families.
Steve Sant, CEO, Parkinson's Australia, said that the ministerial briefing with Sussan Ley, Minister for Health, was very positive and she was opening to continuing discussions about the Make Parkinson's a Priority Framework.
Great results from the morning as we welcome new members to the Parliamentary Friends of Parliament group to support Parkinson's Australia and our objectives:
Ken Wyatt, Assistant Minister for Health and Aged Care
Senator Penny Wong, Leader of the Opposition in the Senate
Senator Simon Birmingham, Minister for Education & Training
Stephen Jones MP
Tony Zappia MP
Senator Anne McEwen
Nick Champion MP
Terri Butler MP
Senator Roberts Simms
Senator Alex Gallacher
You too can Make Parkinson's a Priority by sharing this on your social media pages and forwarding to friends.
Pictured L-R: Prof. George Mellick, Ms Ann Sudmalis MP, Mr Victor McConvey, Ms Monica Hall, Sen. Penny Wong, Ms Monica Hall, Mr Norman Radican, Mr Ken Wyatt
One week to go: Update 1
One week to go until the launch of the Make Parkinson's a Priority campaign at Parliament House in Canberra.
Excitement is building as we are preparing for the launch of the Make Parkinson's a Priority Action Framework on Tuesday 15 March with over 50 politicians and representatives committed to attending.
Parkinson's Australia has also secured meetings that day with the Minister for Health, Sussan Ley, and Opposition Minister for Health, Catherine King. Monica Hall, person with Young Onset Parkinson's, will be joining us at those meetings.
You can help the Make Parkinson's a Priority campaign by encouraging others affected by Parkinson's to subscribe through our website, by liking the Parkinson's Australia Facebook page, sharing this update on Facebook and forwarding it to a friend - all of which can be done through the icons below. Let's build our community to Make Parkinson's a Priority!
Thanks for your support.