michaelwheelson.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

#ThunderUp

submitted 8 days ago • 0 comments

Swearing in with one hand, pulling the rug with the other.

submitted 10 days ago • 0 comments

RIP, friend! You might be the funniest person I ever met. Gonna miss our banter. You endured a lot of hate from some in the ALS community because they disagreed with you. I'm sorry for getting you involved in that, but you handled it like a champ. #ALSobit www.davenportfamily.com/obituaries/a...

submitted 14 days ago • 1 comment

Nothing says 'defender of democracy' like wielding the weapon of a Sith Lord. So...no Star Wars nerds on his staff?

submitted 48 days ago • 0 comments

May the 4th be with you my fellow #ALSWarriors!

submitted 48 days ago • 0 comments

ChatGPT, give us a Muppet Makeover!

submitted 58 days ago • 0 comments

While this is definitely a step in the right direction, many #ALS caregivers have to quit working entirely to care for us. Which also does not allow them to put earnings towards Social Security & Medicare for when they will need it.

submitted 68 days ago • 0 comments

Survey open! Help us learn more about social connection/quality of life for pALS and current/past caregivers. Your responses will be used to identify common challenges and develop approaches to keep members of the community connected in meaningful and fulfilling ways. www.als.org/research/als...

submitted 93 days ago • 0 comments

A ‘conflict of interest-free’ FDA advisory committee policy is a terrible idea www.statnews.com/2025/03/14/f... via @statnews.com

submitted 99 days ago • 0 comments

Oh, DOGE! This grant is to study alternative feminine hygiene products using natural fibers instead of synthetic ones. There was one line that used trans and intersex people in their description of the population menstruating. You can read for yourself here: www.usaspending.gov/.../ASST_NON...

submitted 103 days ago • 0 comments

My incredible wife, a full-time caregiver and RD recently gave a webinar for www.alsnutrition.org. She shares our story, the realities of caregiving, and practical ways RDs can help. Check it out to learn about our experience and see some interesting photos of me 😏. youtu.be/1msoAEBD18U?...

submitted 106 days ago • 0 comments

🤦‍♂️

submitted 107 days ago • 0 comments

submitted 109 days ago • 0 comments

You can vote for a flat-Earther but you can't vote the Earth flat. #GoScience💪

submitted 128 days ago • 2 comments

I'm sure there are some legitimate government costs that need to be reviewed, but cutting NIH funding would greatly impact research for ALS and other diseases. Please consider asking your Congress members to oppose this. www.votervoice.net/MDA/Campaign...

submitted 131 days ago • 0 comments

RIP, Mark! He was a fellow #ALS FDA patient rep serving on both AMX Adcoms. Mostly, he was a great dude and I'm glad I got to know. #ALSobit www.legacy.com/us/obituarie...

submitted 133 days ago • 0 comments

Would anyone consider cutting off the fuel for a test pilot mid-flight? Of course not. That's exactly what is happening to some people who are our test pilots in clinical trials right now.

submitted 134 days ago • 1 comment

Suddenly cutting off USAID left people around the world with experimental drugs and medical products in their bodies, cut off from the researchers who were monitoring them, and generating waves of suspicion and fear. www.nytimes.com/2025/02/06/h...

submitted 135 days ago • 0 comments

submitted 142 days ago • 0 comments

Guess my morning 💩 about to get 25% more expensive. apnews.com/article/colo...

submitted 146 days ago • 0 comments

We are building an #ALS community for persons living with ALS and former/current caregivers in Slack called ALStogether. Slack is an incredible platform to chat and connect. Would love for you to join us. www.alstogether.org

submitted 149 days ago • 0 comments

RIP, friend! #ALSobit matthewsfuneralhome.com/michael-darr...

submitted 149 days ago • 0 comments

Hard to argue with that! 🤣

submitted 154 days ago • 0 comments

Dying to meet you.

submitted 155 days ago • 0 comments

Got an email from a hacker claiming they have video of me jerking off to porn and will send it to my contacts unless I pay up. Dude, I have ALS. If I could do that, I’d send the video out myself as a damn miracle! Nice try, though. 🤣

submitted 161 days ago • 0 comments

For people with ALS- Dr Nadia Sethi is conducting a short survey on actigraphy/wearables. For your consideration... www.surveymonkey.com/r/F659SN9

submitted 163 days ago • 0 comments

#ALSsucks 💔

submitted 188 days ago • 1 comment

For Shelby, and the hundreds of other people who depend on #Qalsody, it should never come to this. My fight to get insurance to cover my pricey #ALS drug | STAT www.statnews.com/2024/12/13/a...

submitted 189 days ago • 0 comments

Breaking News! The Centers for Medicare and Medicaid Services has announced a historic directive requiring Medicare Advantage plans to approve coverage for Qalsody, a treatment for people living with genetic SOD1-ALS. Learn more about this historic moment: bit.ly/qalsody-access

submitted 192 days ago • 0 comments

It would be amazing if everyone connected to ALS reposted this. It says many of the things researchers have said behind the scenes for years, in publication form.

submitted 192 days ago • 3 comments