ALS Advocacy
@alsadvocacy.bsky.social
ALS = Lou Gehrig's Disease Thought it had been cured by now?
Still no known cause. Still no cure. Still meh treatments. Still quickly fatal. Still outrageous.
https://x.com/alsadvocacy
Still no known cause. Still no cure. Still meh treatments. Still quickly fatal. Still outrageous.
https://x.com/alsadvocacy
Registration is open.
The 9th annual...
MoreThanOurStories - Feb 10-11, 2026
In person Washington, DC or online.
A different kind of public policy conference.
www.morethanourstories.org
#kickALS
All are welcome.
The 9th annual...
MoreThanOurStories - Feb 10-11, 2026
In person Washington, DC or online.
A different kind of public policy conference.
www.morethanourstories.org
#kickALS
All are welcome.
December 13, 2025 at 10:48 AM
Registration is open.
The 9th annual...
MoreThanOurStories - Feb 10-11, 2026
In person Washington, DC or online.
A different kind of public policy conference.
www.morethanourstories.org
#kickALS
All are welcome.
The 9th annual...
MoreThanOurStories - Feb 10-11, 2026
In person Washington, DC or online.
A different kind of public policy conference.
www.morethanourstories.org
#kickALS
All are welcome.
A prelim slide in rhine epigenetic presentation.
Not to take away from the point if his presentation, but these data bother me. #alsmndsymp
Not to take away from the point if his presentation, but these data bother me. #alsmndsymp
December 6, 2025 at 5:28 PM
A prelim slide in rhine epigenetic presentation.
Not to take away from the point if his presentation, but these data bother me. #alsmndsymp
Not to take away from the point if his presentation, but these data bother me. #alsmndsymp
Interesting on epigenetic clocks, mDNA. Rogaeva. #alsmndsymp
December 6, 2025 at 5:00 PM
Interesting on epigenetic clocks, mDNA. Rogaeva. #alsmndsymp
The technology need not be complicated or expensive.
For someone w ALS who can't work the switch on a lamp, victory comes with a clap.
For someone w ALS who can't work the switch on a lamp, victory comes with a clap.
December 2, 2025 at 9:35 AM
The technology need not be complicated or expensive.
For someone w ALS who can't work the switch on a lamp, victory comes with a clap.
For someone w ALS who can't work the switch on a lamp, victory comes with a clap.
For those who are bombarded with unsolited contact from people trying to make you feel stupid for not having their Medicare Advantage plan, you are not stupid.
Below is from medicare.gov.
Be strong.
Below is from medicare.gov.
Be strong.
November 14, 2025 at 2:02 PM
For those who are bombarded with unsolited contact from people trying to make you feel stupid for not having their Medicare Advantage plan, you are not stupid.
Below is from medicare.gov.
Be strong.
Below is from medicare.gov.
Be strong.
So help me, if any researchers complain about ALS trial participantion, I would like to send them to neals.org today to search for a trial. On what planet is it ok to waste people’s time and effort this way?
October 29, 2025 at 6:25 PM
So help me, if any researchers complain about ALS trial participantion, I would like to send them to neals.org today to search for a trial. On what planet is it ok to waste people’s time and effort this way?
So many Qs on this one.
Do we know what pct of ppl w ALS are actually enrolled in traditional Medicare vs advantage vs private payers vs Medicaid...
How many ppl w ALS have such a "clean" period when joining Medicare because of ALS?
Anyway, interesting, but...
www.ajmc.com/view/medicar...
Do we know what pct of ppl w ALS are actually enrolled in traditional Medicare vs advantage vs private payers vs Medicaid...
How many ppl w ALS have such a "clean" period when joining Medicare because of ALS?
Anyway, interesting, but...
www.ajmc.com/view/medicar...
October 29, 2025 at 7:26 AM
So many Qs on this one.
Do we know what pct of ppl w ALS are actually enrolled in traditional Medicare vs advantage vs private payers vs Medicaid...
How many ppl w ALS have such a "clean" period when joining Medicare because of ALS?
Anyway, interesting, but...
www.ajmc.com/view/medicar...
Do we know what pct of ppl w ALS are actually enrolled in traditional Medicare vs advantage vs private payers vs Medicaid...
How many ppl w ALS have such a "clean" period when joining Medicare because of ALS?
Anyway, interesting, but...
www.ajmc.com/view/medicar...
And here she is ;-)
October 18, 2025 at 12:56 PM
And here she is ;-)
Stories like this are my source of hope #statsummit
October 15, 2025 at 1:13 PM
Stories like this are my source of hope #statsummit
Troy Fields repping ALS Problem Solvers at NEALS meeting... Data on Act for ALS EAPs...
October 10, 2025 at 3:20 PM
Troy Fields repping ALS Problem Solvers at NEALS meeting... Data on Act for ALS EAPs...
A big dose of irony here because even outside of a shutdown "the information on this website may not be up to date and the agency may not be able to respond to inquiries."
Go figure.
Go figure.
October 10, 2025 at 9:55 AM
A big dose of irony here because even outside of a shutdown "the information on this website may not be up to date and the agency may not be able to respond to inquiries."
Go figure.
Go figure.
A/c on last week. This morning…
October 9, 2025 at 2:06 PM
A/c on last week. This morning…