@uow Prof. of Neurodegenerative disorders. A Wollongong local, a husband, a father, leader uow MND research team, @illawarrahawks #1 ticketholder .
Sep 30, 2020 • 13 tweets • 4 min read
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
Apr 15, 2020 • 6 tweets • 4 min read
#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 @TrendsNeurocell.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
Mar 8, 2020 • 7 tweets • 5 min read
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…
Jan 17, 2020 • 8 tweets • 3 min read
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...
Jan 7, 2020 • 5 tweets • 1 min read
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...
Dec 8, 2019 • 14 tweets • 7 min read
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 …
Sep 16, 2019 • 4 tweets • 1 min read
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
Mar 10, 2019 • 7 tweets • 5 min read
@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???
