SuMon KM, Ph.D

31 May is Nemaline Myopathy awareness day. It is what I have. There are NO treatment available.
Shares or a small donation helps towards finding treatment. Being rare, it gets almost no funding from the government or drug companies.
app.99pledges.com/fund/AFBSSha...

Even without postal issues, there are many who are bedbound and housebound who live alone or have no support. Getting a witness and posting it are also huge barriers. PWDs should be able to vote. Can we get phone voting available for those in this situation? 2/2

Today I heard some housebound disabled folks did not get their postal vote kit from the AEC. Were told no option available and phone voting is only for the visually impaired. I am worried many will miss out their chance to vote this election. 1/2

I am feeling heartbroken 💔 My parents are going overseas today. End of an era and worried dad will not remember me when I see him next 😢

Feeling so happy I managed to do some javascript programming in Qualtrics today. Nothing quite like tackling something new and getting code to do what you want it to.😀😀

Great advice!

I am feeling meh about International Day of People with Disability. It’s a day that reminds me of all the barriers we face. Often what abled bodied people say on IDPWD feels like lip service. And every year on this day I am reminded we have progressed so little since this time the year before.

‘I was in denial about it’: actor Matt McGorry on having long Covid Orange Is the New Black and How to Get Away With Murder star speaks about the disease and another way of looking at health

Fantastic article on Long Covid where actor Matt McGorry shares his experience.
Having read Care Work and loved it, I am now going to add the other books he mentioned to my to-read list 😀

www.theguardian.com/wellness/ng-...

Lots of rain means there are little turtles on the main road out of our neighbourhood. So lovely to see people stopping and moving them out of the way. It’s good to be reminded of our humanity.

Oh just ordered some. They look awesome

Devastating loss for our community. She helped so many! Thinking of her family especially her little one 💔

I am absolutely loving my airspot. It is light and small and the battery lasts about a week. I have it attached to my key chain. Now I don’t have to carry my Aranet around 😀

A photo of seven women in wheelchairs and scooters under a canopy of trees

I had such a great time hanging out with 7 fabulous ladies in Canberra city earlier this month. They are my rock, my disability doulas. We met as part of a life changing peer connect program by MDNSW. Thank you MDNSW 🙏

Calling quant researchers! We are looking for someone to join our team. We are a small team doing research that directly influences policy. I love what I do and it gives me a reason to get out bed everyday. 😀

www.apsjobs.gov.au/s/job-detail...

Thanks Kelly. Super useful article and have shared with my friends.

Here's a why and here is a how:

bsky.app/profile/drem...

Coffee and green mango salad (but not at the same time 😀)

Thank you

Thank you!

Terrific thread that needs to be in the #disability ♿️ feed, so I'm putting it there!

A table full of supplements, scale and mini spoons for micro dosing

Day 1 of mitochondrial protocol. Please wish me luck.

New study reveals Australian Long COVID response lagging Australia’s Long COVID response is falling short of international standards and needs an urgent overhaul, a new study warns.

Aust LC Response: Below International Standards 📌

In VIC: "14% .. who had C19 suffer from LC"

90% of with LC had mild C19 symptoms

Many with LC are not being treated as per recognised international stds

Research: RMIT University & Northern Health

www.rmit.edu.au/news/all-new...

Never suggest that Indigenous Australians were against the Yes vote. Especially those in remote areas.

Thanks to Rob Baillieu for this map.

Yay! I just discovered @thecovidinfoguy.bsky.social is here! Denis has religiously been tweeting Aust Covid news articles and govt announcements since the dawn of time

Picture of a WhillC wheelchair in front of train seat.

Loving Sydney train trips for accessibility :-) Now I can go to Sydney from Canberra anytime I want. First trip on trains in a wheelchair ticked off.

Feeds are a good way to follow topics of interest or find folks. If you add 🧪 to a post it will be included in the What's Science feed. Add “Medsky","Medtwitter", or 🩺 or ⚕️, to have the post in the Medsky feed. If you add “epidemiology”, “episky”, “epitwitter”, it will be added to the Episky feed.

My skills as a researcher and my perspective as a LC sufferer, using up my very limited spoons. All just to find help for all of us. How can consumers as sick as me all have institutional emails? Many of us can’t even work because we are too sick!!!!!

The MRFF Long Covid grant guidelines say collaborate with consumers meaning people like me with LC. But to register an account with them, they need an institutional email or personal email with my name for transparency. My email definitely has my name!! And I am not trying to profit but volunteering