SuMon KM, Ph.D
@sumonkyawmyint1.bsky.social
population health, scientist, feminist, living with rare disease, disability and chronic illnesses, NDIS, lover of books & science, all posts are personal
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...
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...
NM AWARENESS SHARE-A-THON
Throughout the month of May, we invite you to join A Foundation Building Strength in our Share-A-Thon, a simple yet powerful way to spread awareness and bring hope to families living with Nemaline Myo...
app.99pledges.com
May 31, 2025 at 1:30 AM
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...
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...
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
May 2, 2025 at 12:40 PM
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 😢
December 11, 2024 at 2:53 AM
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.😀😀
December 6, 2024 at 5:02 AM
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.😀😀
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.
December 3, 2024 at 7:40 AM
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.
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-...
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-...
‘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
www.theguardian.com
December 3, 2024 at 7:36 AM
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-...
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.
November 30, 2024 at 7:23 AM
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.
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 😀
November 24, 2024 at 7:00 AM
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 😀
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 🙏
November 23, 2024 at 1:19 AM
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...
APS Jobs
APS Jobs, gateway to the Australian Public Service.
www.apsjobs.gov.au
November 21, 2024 at 9:53 PM
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...
Reposted by SuMon KM, Ph.D
November 12, 2024 at 2:26 AM
Reposted by SuMon KM, Ph.D
Terrific thread that needs to be in the #disability ♿️ feed, so I'm putting it there!
I'd love if urbanist anti-car people would stop and listen to what disabled people are saying
Disabled people don't want to maintain the current car supremacy. But they do need to still have car access (because cars are mobility aids!)
Car independent places can still allow for disabled car access
Disabled people don't want to maintain the current car supremacy. But they do need to still have car access (because cars are mobility aids!)
Car independent places can still allow for disabled car access
November 4, 2023 at 2:20 AM
Terrific thread that needs to be in the #disability ♿️ feed, so I'm putting it there!
Day 1 of mitochondrial protocol. Please wish me luck.
November 2, 2023 at 2:41 AM
Day 1 of mitochondrial protocol. Please wish me luck.
Reposted by SuMon KM, Ph.D
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...
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...
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.
www.rmit.edu.au
October 23, 2023 at 3:30 AM
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...
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...
Reposted by SuMon KM, Ph.D
Never suggest that Indigenous Australians were against the Yes vote. Especially those in remote areas.
Thanks to Rob Baillieu for this map.
Thanks to Rob Baillieu for this map.
October 19, 2023 at 7:17 AM
Never suggest that Indigenous Australians were against the Yes vote. Especially those in remote areas.
Thanks to Rob Baillieu for this map.
Thanks to Rob Baillieu for this map.
Reposted by SuMon KM, Ph.D
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
October 21, 2023 at 11:43 PM
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
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.
October 18, 2023 at 6:14 AM
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.
Reposted by SuMon KM, Ph.D
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.
October 10, 2023 at 8:39 PM
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.
Does irritability and a lack of ability to put up with nonsense rules that just make life harder comes with LC? I have always been a patient, understanding person but I feel like I am making complaints left and right these days. Today my ire is with the NMHRC 🤦🏻♀️🤦🏻♀️🤦🏻♀️
October 10, 2023 at 11:08 PM
Does irritability and a lack of ability to put up with nonsense rules that just make life harder comes with LC? I have always been a patient, understanding person but I feel like I am making complaints left and right these days. Today my ire is with the NMHRC 🤦🏻♀️🤦🏻♀️🤦🏻♀️
Did not manage to get out of the house this weekend from a crash but at least I could sit up a bit. Wanted to go to APH Open Day and also do early voting but as usual, I can’t plan my weekends 🤦🏻♀️
October 8, 2023 at 9:06 PM
Did not manage to get out of the house this weekend from a crash but at least I could sit up a bit. Wanted to go to APH Open Day and also do early voting but as usual, I can’t plan my weekends 🤦🏻♀️