MND Australia
MND Australia
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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.
มุมมอง: 78

วีดีโอ

Alessandra Ferri
มุมมอง 108หลายเดือนก่อน
Exercise as Medicine in people living with Motor Neuron Disease
National MND Lived Experience Network
มุมมอง 297หลายเดือนก่อน
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
มุมมอง 103หลายเดือนก่อน
Identifying and responding to the health literacy challenges of people living with MND in Australia
Marnie Graco
มุมมอง 88หลายเดือนก่อน
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
Janet Hough
มุมมอง 170หลายเดือนก่อน
Partnering with PLEx in MND research
Susan Mathers
มุมมอง 358หลายเดือนก่อน
Phase 1 Study of Monepantel in Patients with Amyotrophic Lateral Sclerosis
Panel discussion: New Standards in Clinical Trials and Care
มุมมอง 75หลายเดือนก่อน
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?
มุมมอง 79หลายเดือนก่อน
Dr Angela Genge, Director, Montreal Neurological Institute, Canada vs Dame Pamela Shaw, Director, Sheffield Institute for Translational Neuroscience UK
Rebecca Francis
มุมมอง 80หลายเดือนก่อน
How do health care practitioners recognise, provide information on, and manage cognitive and behavioural symptoms associated with MND? Exploring practices, enablers and barriers.
Julie Labra
มุมมอง 104หลายเดือนก่อน
Healthcare inequities for people living with MND in NSW
Targeting genes in the therapy of MND
มุมมอง 49หลายเดือนก่อน
Presented by Professor Kevin Talbot, Professor of Motor Neuron Biology, Oxford UK
The translational challenge: do preclinical models meet our needs?
มุมมอง 40หลายเดือนก่อน
Presented by A/Prof Shyuan Ngo from the University of Queensland
Development of Novel Therapies for ALS: A focus on biomarker development
มุมมอง 64หลายเดือนก่อน
Presented by Dr Lucie Bruijn (Novartis)
Debate: Neurofilament light chain is the most important biomarker in the MND/ALS field
มุมมอง 68หลายเดือนก่อน
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
มุมมอง 169หลายเดือนก่อน
What causes MND? A global update and new insights
MND Open Forum
มุมมอง 2182 หลายเดือนก่อน
MND Open Forum
Introduction to the mndconnect.org.au website
มุมมอง 1905 หลายเดือนก่อน
Introduction to the mndconnect.org.au website
Why we need more data and what we are doing to get it
มุมมอง 1575 หลายเดือนก่อน
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
มุมมอง 1336 หลายเดือนก่อน
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
มุมมอง 1217 หลายเดือนก่อน
How tech research can help people living with MND
Exercise and motor neurone disease (MND)
มุมมอง 2.2K7 หลายเดือนก่อน
Exercise and motor neurone disease (MND)
Diagnosing motor neurone disease (MND)
มุมมอง 2.3K10 หลายเดือนก่อน
Diagnosing motor neurone disease (MND)
Big Ideas Session
มุมมอง 6611 หลายเดือนก่อน
Big Ideas Session
Clinical Care sessions
มุมมอง 4511 หลายเดือนก่อน
Clinical Care sessions
Dr Rachel Yerbury and Dr Darren Saunders
มุมมอง 22611 หลายเดือนก่อน
Dr Rachel Yerbury and Dr Darren Saunders
Professor Rick Bedlack, Duke ALS clinic, USA
มุมมอง 3.5K11 หลายเดือนก่อน
Professor Rick Bedlack, Duke ALS clinic, USA
Cognitive Changes in MND
มุมมอง 16611 หลายเดือนก่อน
Cognitive Changes in MND
Eating and speaking in MND: how are researchers targeting appetite and speech decline?
มุมมอง 133ปีที่แล้ว
Eating and speaking in MND: how are researchers targeting appetite and speech decline?
Bringing new treatments through the pipeline
มุมมอง 170ปีที่แล้ว
Bringing new treatments through the pipeline

ความคิดเห็น

  • @kayleighcudine5281
    @kayleighcudine5281 5 วันที่ผ่านมา

    This song is beautiful

  • @kayleighcudine5281
    @kayleighcudine5281 5 วันที่ผ่านมา

    My father had MND

  • @aishaa5078
    @aishaa5078 21 วันที่ผ่านมา

    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.

  • @marleneezekiela9482
    @marleneezekiela9482 หลายเดือนก่อน

    Are there workshops we can attend. My husband suffers from MND

  • @JETechnology66
    @JETechnology66 หลายเดือนก่อน

    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.

  • @auchendinny1
    @auchendinny1 หลายเดือนก่อน

    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.

  • @susanjacquier5358
    @susanjacquier5358 หลายเดือนก่อน

    Wonderful project. So vital for everyone .

  • @susansiebuhr375
    @susansiebuhr375 หลายเดือนก่อน

    My Husband was diagnosed with ftd first then mnd 15 months later at 54 years ago. Totally devastated 😢

  • @ryansmock2709
    @ryansmock2709 หลายเดือนก่อน

    Thank You Susan for all of your efforts applied to the Pharmaust Phase I MND Trial , Highest Regards to you and your Team ..

  • @EmelyKapadia-b2k
    @EmelyKapadia-b2k หลายเดือนก่อน

    Donnie Passage

  • @peterfarrugia6794
    @peterfarrugia6794 2 หลายเดือนก่อน

    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 ❤️

  • @kaleemsiddiqui5838
    @kaleemsiddiqui5838 3 หลายเดือนก่อน

    I am suffering from mnd please help me

  • @nitinkapoor3578
    @nitinkapoor3578 3 หลายเดือนก่อน

    How to enrol in this trial, please give me contact details

  • @Cruella-Deville
    @Cruella-Deville 4 หลายเดือนก่อน

    PLS help

  • @sharifow9998
    @sharifow9998 4 หลายเดือนก่อน

    L😊

  • @stephenpoe8277
    @stephenpoe8277 4 หลายเดือนก่อน

    As long as there are people like Dr. Bedlack, there is HOPE for those of us with ALS. I am grateful.

  • @mientay8255
    @mientay8255 4 หลายเดือนก่อน

    my wife had ALS

  • @MdAbdullahBinTaohid
    @MdAbdullahBinTaohid 5 หลายเดือนก่อน

    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.

  • @mavischadwick6445
    @mavischadwick6445 5 หลายเดือนก่อน

    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…

  • @mavischadwick6445
    @mavischadwick6445 5 หลายเดือนก่อน

    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.

  • @trudyboschert4472
    @trudyboschert4472 5 หลายเดือนก่อน

    What are the supplements that people with refersal are using?

  • @BalletShoes-c1k
    @BalletShoes-c1k 6 หลายเดือนก่อน

    PS: Covid vaccine connection???

  • @BalletShoes-c1k
    @BalletShoes-c1k 6 หลายเดือนก่อน

    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.

  • @samwisedonegan
    @samwisedonegan 7 หลายเดือนก่อน

    Yall made me choke on my breakfast when I saw “POOP” as your first wordle choice lol

  • @BalletShoes-c1k
    @BalletShoes-c1k 7 หลายเดือนก่อน

    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.

  • @Myjesustv
    @Myjesustv 7 หลายเดือนก่อน

    Pls👍🏽help

  • @Zakariah1971
    @Zakariah1971 7 หลายเดือนก่อน

    root cause is herpes virus

  • @patriciahancock1966
    @patriciahancock1966 7 หลายเดือนก่อน

    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.

  • @Uttkarsh_facts
    @Uttkarsh_facts 8 หลายเดือนก่อน

    Spg 302 coming date

  • @yadnyeshbawaskar2168
    @yadnyeshbawaskar2168 8 หลายเดือนก่อน

    Check stem cell therapy

  • @wnc_BRONCOS_fan
    @wnc_BRONCOS_fan 8 หลายเดือนก่อน

    I feel like the breakthrough in this disease is very close. Praise God. We must keep praying for these scientists, doctors!!!

  • @markfrederick3854
    @markfrederick3854 8 หลายเดือนก่อน

    I HAVE ALS!

  • @michaelrowland1794
    @michaelrowland1794 8 หลายเดือนก่อน

    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

  • @melmcbroome8726
    @melmcbroome8726 9 หลายเดือนก่อน

    contact me for your studies. i have ALS

  • @Catherine-g9y
    @Catherine-g9y 9 หลายเดือนก่อน

    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

  • @marthapenha
    @marthapenha 10 หลายเดือนก่อน

    Fantástico 🎉

  • @MrRenee19921
    @MrRenee19921 10 หลายเดือนก่อน

    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

  • @mkc252
    @mkc252 ปีที่แล้ว

    Wow so empowering for so many of us battling with mnd, thank you xo

  • @carolswift3958
    @carolswift3958 ปีที่แล้ว

    Very interesting and understood you very well sister dr Margreet Ridder…

  • @metalmitch
    @metalmitch ปีที่แล้ว

    Are there any forums where i can talk to other mnd sufferer's?

    • @Deerky23
      @Deerky23 7 หลายเดือนก่อน

      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

  • @nagoronfire3802
    @nagoronfire3802 ปีที่แล้ว

    very helful video

  • @AliRaza-nm6tz
    @AliRaza-nm6tz ปีที่แล้ว

    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.

  • @tim_bublitz
    @tim_bublitz ปีที่แล้ว

    Unbelievably good cause and well played. But when will they stop autotuning beautiful voices like Tim's? Imperfection is beauty.

  • @J1122
    @J1122 ปีที่แล้ว

    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.

  • @james7749
    @james7749 ปีที่แล้ว

    Just found out one my old school mates just passed away from this cruel illness he was a extreme athlete too so so cruel

  • @kirankumarpapavath9924
    @kirankumarpapavath9924 ปีที่แล้ว

    My father suffering from MND disease since 7 months . any updates and treatment about MND?

    • @bhupalprajapati7886
      @bhupalprajapati7886 ปีที่แล้ว

      My father was suffering from MND. Plz give ur connect details I want to connect u

    • @prettysecret6236
      @prettysecret6236 ปีที่แล้ว

      @@bhupalprajapati7886 my uncle also

  • @islamicway1920
    @islamicway1920 2 ปีที่แล้ว

    nice sharing

  • @ehrinlong8213
    @ehrinlong8213 2 ปีที่แล้ว

    Thank you so much xxxxx

  • @MDSamim-ny5ph
    @MDSamim-ny5ph 2 ปีที่แล้ว

    Plz help me sir my country Bangladesh and me MND present plz muja bachya

  • @MDSamim-ny5ph
    @MDSamim-ny5ph 2 ปีที่แล้ว

    Sir plz help me MND treatment Feast medicine