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MND Australia
เข้าร่วมเมื่อ 24 ม.ค. 2012
MND Australia is the national peak body of state organisations that support those living with and impacted by Motor Neurone Disease (MND). Since 1983, we have been the voice for the MND community. Our national and international networks help increase understanding of the disease and advocate for the needs of those affected. We fund world-class research for better treatments, improved care, and ultimately a cure.
Insights from the 2024 Australia and New Zealand MND Research Symposium
Joining us for our October webinar is Taryn Hunt, who has lived experience of MND, Dr Luke McAlary from the University of Wollongong and Rebecca Francis, speech pathologist and PhD candidate from Flinders University. These symposium attendees share their insights, learnings and highlights from the conference.
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วีดีโอ
Alessandra Ferri
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Exercise as Medicine in people living with Motor Neuron Disease
National MND Lived Experience Network
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The National MND Lived Experience Network connects people with lived experience of motor neurone disease with organisations or groups who seek their input on activities relating to: care, awareness, advocacy, information development and research. The Network includes people living in Australia who: * have a confirmed diagnosis of MND * carry a positive genetic mutation, but not diagnosed with M...
Arabelle Douglas
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Identifying and responding to the health literacy challenges of people living with MND in Australia
Marnie Graco
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Understanding the key influences on uptake of non-invasive ventilation from the perspective of people living with motor neurone disease and their carers: a qualitative study using the COM-B model of behaviour
Susan Mathers
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Phase 1 Study of Monepantel in Patients with Amyotrophic Lateral Sclerosis
Panel discussion: New Standards in Clinical Trials and Care
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Featuring panelists Prof Matthew Kiernan (NSW, Aus), A/Prof Susan Mathers (Vic, Aus), Prof Jeffrey Rothstein (USA), Prof David Berlowitz (Vic, Aus), Dr Natalie Gauld (MND NZ & PLex), MND Association, Dame Pamela Shaw (UK)
Debate: Is the future of ALS/MND therapy through targeted or untargeted/cocktail treatments?
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Dr Angela Genge, Director, Montreal Neurological Institute, Canada vs Dame Pamela Shaw, Director, Sheffield Institute for Translational Neuroscience UK
Rebecca Francis
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How do health care practitioners recognise, provide information on, and manage cognitive and behavioural symptoms associated with MND? Exploring practices, enablers and barriers.
Targeting genes in the therapy of MND
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Presented by Professor Kevin Talbot, Professor of Motor Neuron Biology, Oxford UK
The translational challenge: do preclinical models meet our needs?
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Presented by A/Prof Shyuan Ngo from the University of Queensland
Development of Novel Therapies for ALS: A focus on biomarker development
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Presented by Dr Lucie Bruijn (Novartis)
Debate: Neurofilament light chain is the most important biomarker in the MND/ALS field
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Moderated by Dr David Taylor, Vice President of ALS Canada. On the 'for' side of the debate we have Professor Robert Bowser (Barrow Neurological Institute, Arizona) and Professor Andrea Malaspina (UCL) and on the 'against' we have A/Prof Mary Louise Rogers (Flinders University)and Professor Nortina Shahrizaila (University of Malaya)
What causes MND? A global update and new insights
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What causes MND? A global update and new insights
Introduction to the mndconnect.org.au website
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Introduction to the mndconnect.org.au website
Why we need more data and what we are doing to get it
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Why we need more data and what we are doing to get it
How do we get new treatments into the clinic? Clinical trials and the approval process in Australia
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How do we get new treatments into the clinic? Clinical trials and the approval process in Australia
How tech research can help people living with MND
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How tech research can help people living with MND
Exercise and motor neurone disease (MND)
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Exercise and motor neurone disease (MND)
Diagnosing motor neurone disease (MND)
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Diagnosing motor neurone disease (MND)
Dr Rachel Yerbury and Dr Darren Saunders
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Dr Rachel Yerbury and Dr Darren Saunders
Professor Rick Bedlack, Duke ALS clinic, USA
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Professor Rick Bedlack, Duke ALS clinic, USA
Eating and speaking in MND: how are researchers targeting appetite and speech decline?
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Eating and speaking in MND: how are researchers targeting appetite and speech decline?
Bringing new treatments through the pipeline
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Bringing new treatments through the pipeline
This song is beautiful
My father had MND
My father died of this disease. When he was diagnosed of this disease he was 70.He suffered from this disease for 3 years and died at the age of 73.
Are there workshops we can attend. My husband suffers from MND
Hello! there. I saw your videos and was impressed by the quality of your content. However, after analysis, I noticed there needs to be improvement for getting more views and subscribers. You are working hard but the main motive to reach an exact audience is not fulfilled. You are working for your audience if the video can't reach them. That's a waste of your energy and time also. I will show the problem in your video and share how to fix it. Only say ‘yes’ if you want to grow your channel.
As I see it, Lived Experience allows those with MND, and their carers, to voice their concerns, opinions and ideas in a forum where those things are listened to with empathy and understanding, and without judgement. More importantly, the accumulated experiences on the journey that is or has been MND are to be used to plan better future experiences.
Wonderful project. So vital for everyone .
My Husband was diagnosed with ftd first then mnd 15 months later at 54 years ago. Totally devastated 😢
Thank You Susan for all of your efforts applied to the Pharmaust Phase I MND Trial , Highest Regards to you and your Team ..
Donnie Passage
Her little finger on her left hand lost movement and spread to the ring finger and up through the arm and weakening the left shoulder. This took about two to three months. The onset of the weakness in her arm meant each day we were reminded it wasn't going away and you have to just do what you can with every hour in every day - we prayed a lot for a cure, then you also pray for acceptance and a cure. It is a lonely existence living with MND I'm afraid to tell you, but something inside you keeps you going ❤️
I am suffering from mnd please help me
How to enrol in this trial, please give me contact details
PLS help
L😊
As long as there are people like Dr. Bedlack, there is HOPE for those of us with ALS. I am grateful.
my wife had ALS
I saw your MND Australia channel, And your channel content is very good. But video views are not good. Your channel has some issues due to which your videos are not getting good views. The main problem is SEO.
All thanks to DR ALAHO OLU on TH-cam Channel who finally cured me and my wife from MS and ALS. He cures HPV, HSV, Lungs Disease, Cancer, HIV and many more…
All thanks to DR ALAHO OLU on TH-cam Channel who finally cured me and my wife from MS and ALS. He cures HPV, HSV, Lungs Disease, Cancer, HIV and many more.
What are the supplements that people with refersal are using?
PS: Covid vaccine connection???
My heart already always went out to ALS sufferers, & then my brother aged 80 got late onset MND - ALS Bulbar. The anguish of watching him rapidly decline, a shell of himself, swallow & speech impairment, etc. a truly horrific scenario. What puzzles me is surely such late onset is rare? It’s the most vicious & cruel disease out there and as a family we are stunned & heartbroken for our dear family member. No treatment of any significance, terminal. WHAT ‘S BIG PHARMA DOING? Not much in terms of trials. Not a great money spinner for them. Shame on you.
Yall made me choke on my breakfast when I saw “POOP” as your first wordle choice lol
The cruelest disease out there. It’s when you hear there’s no cure or treatment that your heart sinks. Torture is the only word that comes to mind.
Pls👍🏽help
root cause is herpes virus
Thank you Dr. Bedlack and to your whole team for your work!! It does indeed bring hope and courage being part of the pALS community with all the information and support and opportunities to contribute. Your leadership is precious.
Spg 302 coming date
Check stem cell therapy
I feel like the breakthrough in this disease is very close. Praise God. We must keep praying for these scientists, doctors!!!
I HAVE ALS!
I have had bulbar ALS for 2 years and 9 months. Three minutes into video telling what you need, I received none. All iI got were lies. Virginia
contact me for your studies. i have ALS
My boss ia also suffering from MND since almost two years bt it just one week we discovered it's mnd,,is there anything update
How to recover..?
Can u help pls..?
Fantástico 🎉
I feel that I am a very good candidate for these programs mentioned. What is the process? Thank you kindly for more information. Mrs. Richardson
Wow so empowering for so many of us battling with mnd, thank you xo
Very interesting and understood you very well sister dr Margreet Ridder…
Are there any forums where i can talk to other mnd sufferer's?
I know this is 8 months after you posting, but there is a MND support group on facebook i’m in, includes people affected with and by this cruel disease
very helful video
Our governments can waste billions of dollars on weapons and nukes and space projects but guess what they don’t care about such deadly diseases like this.
Unbelievably good cause and well played. But when will they stop autotuning beautiful voices like Tim's? Imperfection is beauty.
I lost a very very special person to MND in 2007. I miss them beyond words. After some nurses came and spoke with me & assured me not to worry as it was not hereditary. I now think how could they have made such an assumption. Anyway, it is what it is. I miss you more than all the oceans combined in space and time Es. I'm attempting to do a coffee, cake & natter morning soon to raise funds for MNDA UK.
Just found out one my old school mates just passed away from this cruel illness he was a extreme athlete too so so cruel
My father suffering from MND disease since 7 months . any updates and treatment about MND?
My father was suffering from MND. Plz give ur connect details I want to connect u
@@bhupalprajapati7886 my uncle also
nice sharing
Thank you so much xxxxx
Plz help me sir my country Bangladesh and me MND present plz muja bachya
Sir plz help me MND treatment Feast medicine