Michael Wilson
@michaelwheelson.bsky.social
Mechanical Engineer. Star Wars better than Star Trek. Agnostic Atheist. Oklahoma Blue Dot. ALS'ing since Feb. 2017.
The latest ALS Focus survey on Health & Wellbeing is open until Nov 14.
If you’re living with ALS, caring for someone with ALS, or a surviving caregiver, would love for you to share your perspective at alsfocus.org
If you’re living with ALS, caring for someone with ALS, or a surviving caregiver, would love for you to share your perspective at alsfocus.org
ALS Focus Survey Program
Through ALS Focus, patient and caregivers learn from others' experiences and have the chance to share their own needs throughout the disease journey.
alsfocus.org
October 28, 2025 at 2:04 PM
The latest ALS Focus survey on Health & Wellbeing is open until Nov 14.
If you’re living with ALS, caring for someone with ALS, or a surviving caregiver, would love for you to share your perspective at alsfocus.org
If you’re living with ALS, caring for someone with ALS, or a surviving caregiver, would love for you to share your perspective at alsfocus.org
Survey Challenge
Hey ALS/MND peeps! Quick mission for you as I know how much you enjoy clicking buttons. Please take this 2025 Fundamental Rights Survey for people with ALS/MND, caregivers, and blood relatives. Open to all around the world.
survey.alchemer-ca.com/s3/50360855/...
Hey ALS/MND peeps! Quick mission for you as I know how much you enjoy clicking buttons. Please take this 2025 Fundamental Rights Survey for people with ALS/MND, caregivers, and blood relatives. Open to all around the world.
survey.alchemer-ca.com/s3/50360855/...
2025 Fundamental Rights Survey
survey.alchemer-ca.com
October 4, 2025 at 7:34 PM
Survey Challenge
Hey ALS/MND peeps! Quick mission for you as I know how much you enjoy clicking buttons. Please take this 2025 Fundamental Rights Survey for people with ALS/MND, caregivers, and blood relatives. Open to all around the world.
survey.alchemer-ca.com/s3/50360855/...
Hey ALS/MND peeps! Quick mission for you as I know how much you enjoy clicking buttons. Please take this 2025 Fundamental Rights Survey for people with ALS/MND, caregivers, and blood relatives. Open to all around the world.
survey.alchemer-ca.com/s3/50360855/...
More like "conservative guys over 40"
September 29, 2025 at 8:32 PM
More like "conservative guys over 40"
FDA Patient-Focused Drug Development: Workshop
COI - Concepts of Interest
MAH - Meaningful Aspects of Health
COA - Clinical Outcome Assessment
Takeaway is FDA very interested in including patient experience data, but is very challenging. These should be part of trial design.
COI - Concepts of Interest
MAH - Meaningful Aspects of Health
COA - Clinical Outcome Assessment
Takeaway is FDA very interested in including patient experience data, but is very challenging. These should be part of trial design.
September 18, 2025 at 6:25 PM
FDA Patient-Focused Drug Development: Workshop
COI - Concepts of Interest
MAH - Meaningful Aspects of Health
COA - Clinical Outcome Assessment
Takeaway is FDA very interested in including patient experience data, but is very challenging. These should be part of trial design.
COI - Concepts of Interest
MAH - Meaningful Aspects of Health
COA - Clinical Outcome Assessment
Takeaway is FDA very interested in including patient experience data, but is very challenging. These should be part of trial design.
Some days this is hard
a man with a mustache is making a funny face and saying i 'm biting my tongue .
ALT: a man with a mustache is making a funny face and saying i 'm biting my tongue .
media.tenor.com
September 4, 2025 at 1:14 AM
Some days this is hard
"Of all the things at risk, the loss of an objective reality is perhaps the most dangerous. The death of truth is the ultimate victory of evil. When truth leaves us...we become vulnerable to the appetite of whatever monster screams the loudest."
- Mon Mothma, Andor S2E9
- Mon Mothma, Andor S2E9
July 18, 2025 at 7:29 PM
"Of all the things at risk, the loss of an objective reality is perhaps the most dangerous. The death of truth is the ultimate victory of evil. When truth leaves us...we become vulnerable to the appetite of whatever monster screams the loudest."
- Mon Mothma, Andor S2E9
- Mon Mothma, Andor S2E9
Reposted by Michael Wilson
The real purpose of the scientific method is to make sure nature hasn’t misled you into thinking you know something you actually don’t know.
- Robert M. Pirsig
- Robert M. Pirsig
July 6, 2025 at 2:10 PM
The real purpose of the scientific method is to make sure nature hasn’t misled you into thinking you know something you actually don’t know.
- Robert M. Pirsig
- Robert M. Pirsig
Reposted by Michael Wilson
Cassidy was the deciding vote to confirm RFK Jr. based on a promise not to fire the panel. Maybe confirmation promises aren’t enough when there is ZERO accountability!
June 24, 2025 at 12:35 AM
Cassidy was the deciding vote to confirm RFK Jr. based on a promise not to fire the panel. Maybe confirmation promises aren’t enough when there is ZERO accountability!
Swearing in with one hand, pulling the rug with the other.
June 11, 2025 at 9:48 PM
Swearing in with one hand, pulling the rug with the other.
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...
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...
Andy Buckley Obituary June 3, 2025 - Davenport Family Funeral Homes And Crematory
View Andy Buckley's obituary, send flowers, find service dates, and sign the guestbook.
www.davenportfamily.com
June 7, 2025 at 6:57 PM
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...
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...
Nothing says 'defender of democracy' like wielding the weapon of a Sith Lord. So...no Star Wars nerds on his staff?
May 4, 2025 at 11:06 PM
Nothing says 'defender of democracy' like wielding the weapon of a Sith Lord. So...no Star Wars nerds on his staff?
May the 4th be with you my fellow #ALSWarriors!
May 4, 2025 at 6:05 PM
May the 4th be with you my fellow #ALSWarriors!
ChatGPT, give us a Muppet Makeover!
April 25, 2025 at 2:12 AM
ChatGPT, give us a Muppet Makeover!
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.
April 14, 2025 at 8:33 PM
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.
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...
www.als.org/research/als...
ALS Focus Survey Program
Through ALS Focus, patient and caregivers learn from others' experiences and have the chance to share their own needs throughout the disease journey.
www.als.org
March 20, 2025 at 10:17 PM
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...
www.als.org/research/als...
Reposted by Michael Wilson
A ‘conflict of interest-free’ FDA advisory committee policy is a terrible idea www.statnews.com/2025/03/14/f... via @statnews.com
A ‘conflict of interest-free’ FDA advisory committee policy is a terrible idea
Banning FDA ad-comm members who have any conflict of interest might sound good, but look a little closer.
www.statnews.com
March 14, 2025 at 7:37 PM
A ‘conflict of interest-free’ FDA advisory committee policy is a terrible idea www.statnews.com/2025/03/14/f... via @statnews.com
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...
You can read for yourself here:
www.usaspending.gov/.../ASST_NON...
March 11, 2025 at 1:33 AM
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...
You can read for yourself here:
www.usaspending.gov/.../ASST_NON...
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?...
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?...
Life with ALS: Caregiving, Chaos, and How Dietitians Can Help
YouTube video by ALS Nutrition
youtu.be
March 8, 2025 at 2:45 AM
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?...
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?...
Reposted by Michael Wilson
Reposted by Michael Wilson
February 13, 2025 at 11:04 PM
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...
www.votervoice.net/MDA/Campaign...
Congress: Oppose Catastrophic Research Cuts
The National Institutes of Health (NIH) recently announced a major reduction in grant funding that would have a catastrophic impact on research, especially in the neuromuscular disease field. NIH fund...
www.votervoice.net
February 10, 2025 at 11:46 PM
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...
www.votervoice.net/MDA/Campaign...
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...
#ALSobit
www.legacy.com/us/obituarie...
Mark Weston Obituary (1952 - 2025) - Lakewood, CO - Colorado Community Media
View Mark S. Weston's obituary, send flowers and sign the guestbook.
www.legacy.com
February 8, 2025 at 9:48 PM
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...
#ALSobit
www.legacy.com/us/obituarie...