just watching this after learning of your passing. Justin if wherever you end up eternally resting you read this I'm full of awe, admiration and gratitude for you and for your unflinching resolve to face your genetic enemy. You are Truly one of the most remarkable men i have ever had the heartbreaking pleasure to read about. I hope you rest in peace and that peace finds its way in the heart of your family and those who loved you.
I have survived 43 years with the ugly thing. Diagnosed in 1978. It has destroyed my arms, hands and shoulders. So far, my speech and swallow are not affected. "Yet,". If I am of any help to you. You can get in touch. Andy McGovern. Longest survivor in the world at the moment. (Since Stephen Hawking passed on)
sounds like your upper neurons were largely unaffected then for some reason they seem to be the most important ones since they are in the brain and control speech swallow and legs, the lower are in the spine. any theories to why you made it for so long? i think i have pre-als symptoms now, any advice for me?
I lost my nephew recently due to rapid deterioration on MND. It was very sudden because of Cardiac arrest leading to brain damage. Very deadly disease. Justin's story is very inspiring to read more about this deadly disease.
Justin, I hope you were able to achieve what you had set out to do. MND is an absolute shit-disease, and while you were able to fend it off for quite a while finally it got you. Your courage, your enthusiasm for your research, and your indomitable spirit are your legacy for your team and will inspire them to continue your great work. You were and are a most remarkable man; fly high, and wherever you are please rest easy. Love, peace and hope for you wife, your children, and your extended family.
I knew little about MND. I am aware now, and will contribute what I can to help find a cure. Professor Rowe explained it perfectly. The puppet imagery was visceral so I won't forget.
Just because this 1 is bad, doesn't mean it's the worst. There's other's way worst. There's 1 disease in particular that can't be tested for because there's no way to test it but people that suffer from it will get full body burn pain, described as being burned alive. The disease is so bad that everyone that's suffered from it has taken their own life due to there being no way to treat the pain of being boiled alive. (I forgot the disease name but im sure you can easily find it)
I didn't want to open the comment section, to read that he have passed away 😢😢😢. I can't afford to know that we lost a good man by this tormenting disease. Lord help Justin save other families please.
I’m a chronic pain patient who cried this morning over my constant pain but it’s not lethal. I want to take those tears back. Who the hell am I with my little nerve disease?
What a great human being, please read revelation 21:3,4, as this is a comfort to me that things that we as humans suffer, sickness and death will not always be.💖
OMG, horrible disease, if u have a dog or cat or any animal sick like that, u would eutanise it. Why do they let human to suffer that much. It's horrendous even to watch
Maybe someone like Elon Musk could fund something useful like research into treating and perhaps curing diseases rather than shooting rockets into space.
Justin is a legend. I had him in my class in Yr.7 in 1986. I left that school at the end of '86 to go to Newcastle Uni. I never forgot this mature, tallish year 7 kid who spoke to me about basketball. I went to his funeral at Wollongong Uni and bought his book. A fantastic read.
@aliciam6725 I have expertise in AI but not neuroscience. I lost my father to MND. There is a possibility for AI, more formally Machine Learning and Deep Learning to assist in this space, indeed it already is. The biggest challenge is that these techniques thrive on data and MND, compared to other neurological conditions, is relatively sparse in data. But this is improving over time! Expect drug discovery and gene detection being low hanging fruit for these techniques, as well as using AI for earlier assisted diagnosis (critically important in MND) as well as the numerous ways that AI can assist patients with loss of function (e.g predictive text, speech to text, predictive sensors etc.)
just watching this after learning of your passing. Justin if wherever you end up eternally resting you read this I'm full of awe, admiration and gratitude for you and for your unflinching resolve to face your genetic enemy. You are Truly one of the most remarkable men i have ever had the heartbreaking pleasure to read about. I hope you rest in peace and that peace finds its way in the heart of your family and those who loved you.
Hope he finds the cure , his pure passion for this is amazing . Amazing man .
There is hardly a cure for anything so why would there be a cure for this? People need to stop playing into the hands of the medical industry
I have survived 43 years with the ugly thing. Diagnosed in 1978. It has destroyed my arms, hands and shoulders. So far, my speech and swallow are not affected. "Yet,". If I am of any help to you. You can get in touch. Andy McGovern. Longest survivor in the world at the moment. (Since Stephen Hawking passed on)
sounds like your upper neurons were largely unaffected then for some reason they seem to be the most important ones since they are in the brain and control speech swallow and legs, the lower are in the spine. any theories to why you made it for so long? i think i have pre-als symptoms now, any advice for me?
Amazing!
Curagious .
Are you on a vent
Hi how are you what are you doing that helped
It will happen one day soon, we're getting closer and closer to getting the cure. Thanks to scientists and people like Justin.
What a wonderful man and family. So heartbreaking 💔
What a wonderful human being. RIP Julian
It’s Justin
What a brave man he is... Amazing Justin.
Get behind this effort for the cure.We have to find it.We are losing too many people.
Much respect Justin. Cruel disease. I hope you’re resting peacefully.
I lost my nephew recently due to rapid deterioration on MND. It was very sudden because of Cardiac arrest leading to brain damage. Very deadly disease. Justin's story is very inspiring to read more about this deadly disease.
Justin, I hope you were able to achieve what you had set out to do. MND is an absolute shit-disease, and while you were able to fend it off for quite a while finally it got you. Your courage, your enthusiasm for your research, and your indomitable spirit are your legacy for your team and will inspire them to continue your great work. You were and are a most remarkable man; fly high, and wherever you are please rest easy. Love, peace and hope for you wife, your children, and your extended family.
Oh dear may the cure be found
I knew little about MND. I am aware now, and will contribute what I can to help find a cure. Professor Rowe explained it perfectly. The puppet imagery was visceral so I won't forget.
thx. how is it going so far?
Actually everones mnd is different
You champion Justin - you still have an amazing life x
RIP Justin.😢
A Great man !
Vale Professor Justin Yerbury
Someone said this was the 7th worst disease in the world, but I can't think of a worse one.
Just because this 1 is bad, doesn't mean it's the worst. There's other's way worst. There's 1 disease in particular that can't be tested for because there's no way to test it but people that suffer from it will get full body burn pain, described as being burned alive. The disease is so bad that everyone that's suffered from it has taken their own life due to there being no way to treat the pain of being boiled alive. (I forgot the disease name but im sure you can easily find it)
@@californiadoll6273nope, it's just you who "knows it".
I didn't want to open the comment section, to read that he have passed away 😢😢😢. I can't afford to know that we lost a good man by this tormenting disease. Lord help Justin save other families please.
An inspirational man!
What a brave family people think they have probkems. This family had no choice but face MND head on brave and Amazing .
What an Amazing Scientist!
...Cu ATSM: what is happening with this drug right now (2020) and how can I get someone on a trial.
I’m a chronic pain patient who cried this morning over my constant pain but it’s not lethal. I want to take those tears back. Who the hell am I with my little nerve disease?
What a great human being, please read revelation 21:3,4, as this is a comfort to me that things that we as humans suffer, sickness and death will not always be.💖
OMG, horrible disease, if u have a dog or cat or any animal sick like that, u would eutanise it. Why do they let human to suffer that much. It's horrendous even to watch
my father identified with MND
stay strong, a lot of positive stuff happening right now!
My father too :(
@@SanPot123 I am so sorry, how is your father doing?
Maybe someone like Elon Musk could fund something useful like research into treating and perhaps curing diseases rather than shooting rockets into space.
Justin is a legend. I had him in my class in Yr.7 in 1986. I left that school at the end of '86 to go to Newcastle Uni. I never forgot this mature, tallish year 7 kid who spoke to me about basketball. I went to his funeral at Wollongong Uni and bought his book. A fantastic read.
Why on earth would she have the gene when she's not genetically related to him
What are you talking about? That's literally his biological sister who was worried.
RIP
I am so confused by this I’ve never heard of this in the US is it the same as ALS?
Yes,ALS and MND are interchangeably used
Ramachandran Sankararaman thank you
ALS is subtype of motor neuron disease.
We R aye stupid worthless people in the Unized stats
Is Justin still alive
Would AI make a difference in these treatment-elusive illnesses?
If that’s a stupid question I apologise. It’s a genuine question - genuinely stupid question?
@aliciam6725 I have expertise in AI but not neuroscience. I lost my father to MND.
There is a possibility for AI, more formally Machine Learning and Deep Learning to assist in this space, indeed it already is. The biggest challenge is that these techniques thrive on data and MND, compared to other neurological conditions, is relatively sparse in data. But this is improving over time!
Expect drug discovery and gene detection being low hanging fruit for these techniques, as well as using AI for earlier assisted diagnosis (critically important in MND) as well as the numerous ways that AI can assist patients with loss of function (e.g predictive text, speech to text, predictive sensors etc.)
🙏🫶🏻
RIP