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
Reposted by ALS Advocacy
Man-made public health disaster unfolding in real time.
BREAKING: RFKJr directs that the US instantly stop recommending all vaccinations for children. www.washingtonpost.com/health/2025/...
Under RFK Jr., U.S. plans to stop recommending most vaccines, defer to doctors
The plan, which is not finalized, suggests children get fewer shots and shifts to a model telling parents to consult doctors to make their own vaccine choices.
www.washingtonpost.com
December 19, 2025 at 10:40 PM
Man-made public health disaster unfolding in real time.
Reposted by ALS Advocacy
My latest: Last month, RFK Jr.'s dep. sec. staged something of a coup against FDA boss Marty Makary. The White House waved it off.
But what a year: 4,000 staff out, a drop in foreign inspections and $$ restrictions that left lab staff sitting idle.
GIFT: www.nytimes.com/2025/12/19/h...
But what a year: 4,000 staff out, a drop in foreign inspections and $$ restrictions that left lab staff sitting idle.
GIFT: www.nytimes.com/2025/12/19/h...
F.D.A. Turmoil Keeps Spotlight on Its Commissioner
www.nytimes.com
December 19, 2025 at 2:54 PM
My latest: Last month, RFK Jr.'s dep. sec. staged something of a coup against FDA boss Marty Makary. The White House waved it off.
But what a year: 4,000 staff out, a drop in foreign inspections and $$ restrictions that left lab staff sitting idle.
GIFT: www.nytimes.com/2025/12/19/h...
But what a year: 4,000 staff out, a drop in foreign inspections and $$ restrictions that left lab staff sitting idle.
GIFT: www.nytimes.com/2025/12/19/h...
Ut oh
EXCLUSIVE: The FDA voucher program has become a vehicle for politicization of drug review, staffers say. Staff have been forced to award certain companies vouchers due to White House deals, and at least one voucher was awarded despite staff concerns.
www.statnews.com/2025/12/19/f...
www.statnews.com/2025/12/19/f...
FDA voucher program has become vehicle for political interference in drug review decisions, staffers say
Two government officials told STAT that the White House has been involved in final decisions about the FDA's new priority review voucher program for drug companies.
www.statnews.com
December 19, 2025 at 3:33 PM
Ut oh
Reposted by ALS Advocacy
NEW: The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead.
Use information from your prescription label to locate the factory and see if the plant has a history of inspection violations.
Use information from your prescription label to locate the factory and see if the plant has a history of inspection violations.
Where Was My Generic Prescription Drug Made? - Rx Inspector - ProPublica
The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead. Use information on your prescription label to locate the factory and see inspection reports.
projects.propublica.org
December 18, 2025 at 3:05 PM
NEW: The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead.
Use information from your prescription label to locate the factory and see if the plant has a history of inspection violations.
Use information from your prescription label to locate the factory and see if the plant has a history of inspection violations.
If you're in North Dakota, Alaska, or Hawaii and have received emails from ALS organizations to advocate for Act for ALS, please know that Act for ALS has provided us with a robust natural history study, and we need to fill it with YOUR data... www.all-als.org
ALL ALS Consortium | ALS Research | ALS Disease Progression
Funded by the NIH, the Access for ALL in ALS Consortium, is a community of 2 coordination centers and 35 research sites across the U.S.
www.all-als.org
December 17, 2025 at 8:15 AM
If you're in North Dakota, Alaska, or Hawaii and have received emails from ALS organizations to advocate for Act for ALS, please know that Act for ALS has provided us with a robust natural history study, and we need to fill it with YOUR data... www.all-als.org
ALL ALS is the natural history study that we have needed for years. NIH stepped up and established a study that has the breadth and depth to answer questions that have gone unanswered in smaller, narrower studies.
www.all-als.org
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www.all-als.org
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www.all-als.org
December 17, 2025 at 7:46 AM
ALL ALS is the natural history study that we have needed for years. NIH stepped up and established a study that has the breadth and depth to answer questions that have gone unanswered in smaller, narrower studies.
www.all-als.org
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www.all-als.org
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Reposted by ALS Advocacy
Don't mess with @cdelawalla.bsky.social
We gave Jay Bhattacharya an opportunity to clarify his vaccine stance: does he REALLY believe that the vaccine is worse than the disease? Instead, he launched into a defense of MAHA as the future of scientific inquiry, and never really gave us a straight answer...
@repauchincloss.bsky.social
@repauchincloss.bsky.social
December 16, 2025 at 4:00 PM
Don't mess with @cdelawalla.bsky.social
Reposted by ALS Advocacy
Let’s be clear. This is about cronyism and patronage. The authoritarian and his minions get to decide what science is and who gets to do it. Everything is Lysenkoism now. And it will end in the same way: human suffering and the fall of a nation’s science. Tragedy All around.
Well, this is an utter disaster for science.
This gutting of peer review is very likely driven by Project 2025/OMB/Vought, very likely is about funding junk science, and very likely is coming for #NIH and biomedical research next.
🧪
This gutting of peer review is very likely driven by Project 2025/OMB/Vought, very likely is about funding junk science, and very likely is coming for #NIH and biomedical research next.
🧪
December 16, 2025 at 10:14 AM
Let’s be clear. This is about cronyism and patronage. The authoritarian and his minions get to decide what science is and who gets to do it. Everything is Lysenkoism now. And it will end in the same way: human suffering and the fall of a nation’s science. Tragedy All around.
NIH specifies how grant reviewers should ensure alignment with Trump priorities www.statnews.com/2025/12/15/n... via @statnews.com
NIH specifies how grant reviewers should ensure alignment with Trump priorities
In a memo obtained by STAT, the NIH gives specific steps on how grant reviewers can check for alignment with administration priorities.
www.statnews.com
December 16, 2025 at 8:57 AM
NIH specifies how grant reviewers should ensure alignment with Trump priorities www.statnews.com/2025/12/15/n... via @statnews.com
Reposted by ALS Advocacy
Explore the first seven parts of American Science, Shattered
A multipart series on how the Trump administration has disrupted labs, upended lives, and delayed discoveries.
www.statnews.com/american-sci...
A multipart series on how the Trump administration has disrupted labs, upended lives, and delayed discoveries.
www.statnews.com/american-sci...
American Science, Shattered
An eight-decade partnership between universities and the federal government made U.S. science preeminent. It took Trump less than a year to shred that
www.statnews.com
December 14, 2025 at 9:35 PM
Explore the first seven parts of American Science, Shattered
A multipart series on how the Trump administration has disrupted labs, upended lives, and delayed discoveries.
www.statnews.com/american-sci...
A multipart series on how the Trump administration has disrupted labs, upended lives, and delayed discoveries.
www.statnews.com/american-sci...
Interesting… and let the comments begin,..
Lowering FDA's Drug-Approval Standards Is a Lose-Lose www.medpagetoday.com/opinion/seco...
Opinion | Lowering FDA's Drug-Approval Standards Is a Lose-Lose
Requiring just one trial will neither speed approvals nor support safety
www.medpagetoday.com
December 14, 2025 at 5:43 AM
Interesting… and let the comments begin,..
Reposted by ALS Advocacy
VA plans to abruptly eliminate tens of thousands of health care jobs
Strains on the Veterans Affairs system could grow with the elimination of as many as 35,000 mostly unfilled health care positions, including doctors and nurses.
www.washingtonpost.com/politics/202...
Strains on the Veterans Affairs system could grow with the elimination of as many as 35,000 mostly unfilled health care positions, including doctors and nurses.
www.washingtonpost.com/politics/202...
VA plans to abruptly eliminate tens of thousands of health care jobs
Strains on the Veterans Affairs system could grow with the elimination of as many as 35,000 mostly unfilled health care positions, including doctors and nurses.
www.washingtonpost.com
December 13, 2025 at 1:50 PM
VA plans to abruptly eliminate tens of thousands of health care jobs
Strains on the Veterans Affairs system could grow with the elimination of as many as 35,000 mostly unfilled health care positions, including doctors and nurses.
www.washingtonpost.com/politics/202...
Strains on the Veterans Affairs system could grow with the elimination of as many as 35,000 mostly unfilled health care positions, including doctors and nurses.
www.washingtonpost.com/politics/202...
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.
Reposted by ALS Advocacy
🚨New: Indiana Republicans ignored threats on their lives and rejected President Donald Trump’s demand that they gerrymander the state’s House map to help protect the party’s majority in next year’s midterms.
December 11, 2025 at 9:38 PM
🚨New: Indiana Republicans ignored threats on their lives and rejected President Donald Trump’s demand that they gerrymander the state’s House map to help protect the party’s majority in next year’s midterms.