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…
@Qantas This was going to take a team & accessible transport & accomm & that costs $. While holidays are not paid for by the NDIS, access to a holiday is. Cost of support workers, their travel, plus any costs that I would not incur if I was able bodied, can all be covered by the NDIS.
@Qantas Next step was to assemble the team. On the ground I would need consultation & planning from OT, physio & our support co-ordinator. We would take 2 support workers and a nurse and family. Also the @Qantas Aviation Health Programs would play a huge role.
@Qantas Next step was to assemble the team. On the ground I would need consultation & planning from OT, physio & our support co-ordinator. We would take 2 support workers and a nurse and family. Also the @Qantas Aviation Health Programs would play a huge role.
@Qantas Medical clearance from my neurologist was required. Accessible van, accommodation booked and my equipment duplicated at the destination (shower chair, hoist, bed).
@Qantas The @Qantas Aviation health team were amazing. Several conference calls, two airport practice runs and we were ready.
@Qantas On the day of the flight we had mixed emotions given our rejection at the port earlier in the year. But all the planning paid off and we took off without a hitch. HUGE thanks to all the @Qantas staff that made it happen.
@Qantas The only appropriate seats were in Business class. Even these were tricky. Qantas has access to the eagle hoist in all capital cities. These are specially made to hoist you in to an aircraft seat. I also used my wheelchair cushion on top of the seat for comfort.
@Qantas A harness and a scarf tied around my head kept me in place. Then I could relax and enjoy the in flight entertainment.
@Qantas We holidayed in Bunbury with the family. It was great just to hang out every day with the family. It was valuable moments spent with loved ones. A highlight was a float in the bay, in a custom built wheelchair for water. Thanks Bunbury city.
@Qantas The symposium #ALSSymp#MNDSymp was great. Our work was well received and we learned a lot. It was well worth the effort.
@Qantas I felt like that I was not just alive, but that I was living.
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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
#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
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
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/…
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...
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...
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.