Share this page!

Enter URL or ID to Unroll

You can paste full URL like: https://x.com/threadreaderapp/status/1644127596119195649
or just the ID like: 1644127596119195649

How to get URL link on X (Twitter) App

  1. On the Twitter thread, click on or icon on the bottom
  2. Click again on or Share Via icon
  3. Click on Copy Link to Tweet
  4. Paste it above and click "Unroll Thread"!
  5. More info at Twitter Help
Justin Yerbury AM Profile picture
@jjyerbury
Mar 10, 2019 • 7 tweets • 5 min read • Read on X
@RoyalCaribbean just stopped me going on the family holiday we have been planning since November. Why? Because of my disability. #MND Disgusted right now.
Not good enough @RoyalCaribbean. We told you in November that I have #MND #ALS and you decide as I am boarding that I can't go???
1/2 A quick update: @RoyalCaribbean have made a public statement & contacted my wife regarding issues regarding their processes and out of pocket expenses. What have they forgotten? Just as the staff at the dock didn't have the decency to talk to me, @RoyalCaribPR have not either
2/3 It astonishes me that @RoyalCaribbean did not learn that I am #DisabledNotInvisible. I am still waiting for an apology for the way I was treated. Now x2. I hope that @RoyalCaribPR can show some leadership and show that #Disability matters by donating to a charity
3/3 So to the twitterverse, I need your help: please nominate worthy not for profits working in #Disability or #ALS #MND that @RoyalCaribbean could donate substantially to as an apology to me. Go
I have just been made aware of this fantastic program that aims to reduce barriers for people with #MND #ALS to travel to the International #MND/ALS symposium. Is there someone out there that could help out by setting up a link to take donations for them.
alsmndpatientfellows.wordpress.com/about/

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Justin Yerbury AM

Justin Yerbury AM Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

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 17, 2020
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...
Read 8 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

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

Send Email!

:(