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Justin Yerbury AM Profile picture
@jjyerbury
Jan 17, 2020 • 8 tweets • 3 min read • Read on X
Here is a little story that was relayed to me that has made my day. Read until the end and you will understand why I love the @Wollongong_City community... A thread. 1/8 @UOW @ihmri
A woman who I have known for 20 years wanted to donate to my research. For perspective, she is 87, a local storyteller, parent of children with Fragile X and on the pension...
She wanted to donate $100. She looked at her budget and could only find $50. She decided to save up for the other $50...
For weeks and weeks, she tried to find a spare $50 but she just could not afford it...
One day she went to get her groceries from @woolworths and because she is not up with technology she was struggling with the self check out...
A man behind her in the queue offered to help and she managed to process her shopping. While she was rummaging for cash the man offered to pay for her groceries...
She said thank you but I can pay. He said, I know that you will do something special with that $50 so I want to pay for your groceries...
She said I know exactly what I will do with the money and she donated the $100 to my #MND research. The @Wollongong_City community are amazing! Keep paying it forward people.

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More from @jjyerbury

Justin Yerbury AM Profile picture
Sep 30, 2020
I recently wrote to the @NHMRC and to the Health minister @GregHuntMP about what I felt was a breach of the disability Act during my application for an Investigator Grant. This is how it played out.
A thread. 1/13
Ping @ABCnews @Naturenews
Let’s first set the scene.
There are two types of discrimination:
Direct discrimination occurs when a person with a disability is treated less favourably than a person without a disability would be treated under the same circumstances.
This doesn’t apply here.
2/13
Indirect discrimination happens when there is a policy that applies in the same way for everybody but disadvantages a group of people who share a protected characteristic.
Here is where I believe the 2020 assessment of my application is unlawful.
3/13
Read 13 tweets
Justin Yerbury AM Profile picture
Apr 15, 2020
#MND #ALS is a heterogeneous disease & some say it should be distinct syndromes. Today our theory on how proteome homeostasis (proteostasis) is a unifying principle of ALS is published @TrendsNeuro cell.com/trends/neurosc… This is >10 years in the making. Let me explain: 1/7
12 years ago, at the MND/ALS symposium I spoke with a prominent neurologist/researcher and I ran my idea by him. He told me that it was too complicated and that I should work on it a bit, collect some evidence. Today we publish the result. In essence it goes like this:
2/6
What is a proteome exactly? A proteome is all the proteins in a cell made from the instructions in your DNA. These molecular machines do vital work and include things like haemoglobin to transport oxygen, enzymes to digest food, and collagen to provide physical structure... 3/6 Image
Read 6 tweets
Justin Yerbury AM Profile picture
Mar 8, 2020
One of the big Qs about #MND #ALS is 'what causes disease heterogeneity?'. E.g. Family members inheriting the same mutation but having very different disease courses. Our recent paper with @jakeayersPhD gets us closer. journals.plos.org/plosone/articl… Here is what I mean. A thread 1/7
First, a bit of background. @jakeayersPhD discovered that #MND #ALS could be transmissible in mice. A tiny amount of spinal cord material from a sick mouse injected into the spine of otherwise healthy mice could trigger disease. 2/7 link.springer.com/article/10.100…
Meanwhile, we had been characterizing how the pathological 'shape' of a protein SOD1 could be propagated from one cell to another in cell culture. 3/7
pnas.org/content/111/9/… Image
Read 7 tweets
Justin Yerbury AM Profile picture
Jan 7, 2020
When you heat up🔥 an egg all the proteins aggregate & precipitate out of solution & turn white🍳. Living cells can protect themselves from this type of stress by activating a heat shock response...
The heat shock response ensures that a cell has extra proteins called chaperones that can protect all the other proteins from precipitating and becoming like egg white...
There are many things that can cause proteins to do this including mutations. Just as mutation causes aggregation of particular proteins in neurodegenerative diseases...
Read 5 tweets
Justin Yerbury AM Profile picture
Dec 8, 2019
After a disappointing attempt at a cruise earlier in the year we turned to @Qantas to help us get away with the family to Perth. #MND #ALS @MNDAust

A thread.
@Qantas While a short flight SYD-PER is a relatively simple sojourn that people take for granted, for someone who is totally paralysed & relies on ventilation for life support, it is a BIG deal. I have been asked how we managed to pull it together. Here is how …
@Qantas Firstly, why Perth? The 30th International MND symposium was happening in Perth, so I was extra motivated, it was also a great opportunity to get away with the family. Planning started more than 6 months in advance…
Read 14 tweets
Justin Yerbury AM Profile picture
Sep 16, 2019
Cruise company Royal Caribbean has committed to a range of important practical changes, to address the barriers we faced when trying to take a cruise in March. While the details of the settlement remains confidential, Royal Caribbean has committed to:
Provide a single point of contact for guests with complex needs. Provide more information on their website about accessibility, and how to contact their access team. Make their medical assessment process more transparent. and to Arrange disability training for their staff
I am pleased Royal Caribbean has listened to my concerns, and has worked with me to make changes to ensure that other people with complex needs don’t have to experience the disappointment and hurt of being refused access to a much-anticipated holiday because of their disability.
Read 4 tweets

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