ALS Advocacy
@alsadvocacy.bsky.social
350 followers 420 following 1.5K posts
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
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Such insights from @alondra.bsky.social on this moment in AI and healthcare… I could listen to this and think all day. #statsummit
Alondra Nelson (@alondra.bsky.social)
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alondra.bsky.social
standupforscience.net
Just got a pretty solid testimonial as a productive org for fixing NIH chaos by some victims of NIH chaos #statsummit
STAND UP FOR SCIENCE
standupforscience.net
I got to read this carefully over the weekend. Regardless of where you are politically, there is a treasure trove of history in this.
New from @pzettler.bsky.social @reshmagar.bsky.social + me in @jhppl.bsky.social.
We describe themes driving historic FDA reforms, explain how what's happening under Trump2 is different + call for principles to guide FDA reform and activity across administrations.
read.dukeupress.edu/jhppl/articl...
Reposted by ALS Advocacy
Public health is infrastructure. And every $1 spent on prevention saves up to $5.60 in health costs. So why does Indiana underfund it? We need budgets that reflect care, not crisis.

#FundPublicHealth #INHealthEquity #GoodTrouble #HoosierSky
Every $1 spent on public health prevention saves up to $5.60 in Hoosier healthcare costs.
A troubling portrait of trustworthiness of CDC website. #statsummit
Worth the trip for this #STATSummit
Reposted by ALS Advocacy
Asked about the conversation about vaccines in the U.S. right now, GSK CEO Emma Walmsley says: "The reality is history shows that when vaccination rates drop in any country in the world, infection rates rise. People die unnecessarily."

#STATSummit
I’m liking @biogen ceo attitude about working on the truly innovative stuff #statsummit imo we should reward the innovation and be reserved in what we pay for same old same old in ALS.
Truly a beautiful medical miracle.
A special visitor at #STATSummit — Baby KJ, and in a suit!

His story is here:
www.statnews.com/2025/05/15/c...
Stories like this are my source of hope #statsummit
Reposted by ALS Advocacy
If you’ve been affected by the government shutdown at NIH, CDC, or FDA — we’d still love for you to join us at the #STATSummit this week. Email [email protected] for a complimentary virtual pass.

Explore the agenda: www.statnews.com/stat-summit-...
2025 STAT Summit
Exploring the science, policy, and industry shifts that will define the next decade in health and medicine Register now ABOUT STAT SUMMIT The Next Ten
www.statnews.com
Reposted by ALS Advocacy
Dear funding agencies,

I know we all want to discover the wonder drug that will cure the horrible diseases, but to do that, we need to invest in basic, unsexy, foundational research on how the systems work. Funding can’t all be drug development.

Sincerely,
Looking for basic research grants.
This is just great!
If there are NIH folks who would like to watch our STAT summit (including a panel on the state of the NIH), please reach out and we can get you access
And many of us at #NIH are furloughed right now, so we cannot afford it or attend. We hope it's a successful panel.
Reposted by ALS Advocacy
If there are NIH folks who would like to watch our STAT summit (including a panel on the state of the NIH), please reach out and we can get you access
And many of us at #NIH are furloughed right now, so we cannot afford it or attend. We hope it's a successful panel.
#dingdingding
It's always funny to me when people make up conspiracy theories, as in, "the entire medical community is hiding the cure for cancer." It's hard enough to get three people on a Zoom call at the same time. How are these massive conspiracies coordinated? Maybe they have their own Slack channel?
Imo FDA needs to stick a “safe and effective” and leave pricing negotiations to others.
Reposted by ALS Advocacy
Don't @*&% with public health! Over the weekend, #Trump, #Vought and #RFKJr fired hundreds of staffers at the Centers for Disease Control leaving our premier public health agency in tatters. Get on the phone, write to your members of Congress. This will not stand! actionnetwork.org/letters/writ...
Write to Congress: CDC Employees must be Reinstated
**Please write now to your Senators and Representative demanding that ALL CDC employees be reinstated as part of any agreement to reopen the government.** Late on Friday, October 10, the Trump Admin...
actionnetwork.org
Ut-oh
Trump has suggested companies who fail to reach drug pricing deals could face reevaluation of their drug applications, a move that doesn't comply with US law. The threat however must be taken seriously given the administration's tendency to meddle politically in FDA's decision, experts said.
US FDA Commissioner’s Involvement In AstraZeneca Pricing Deal Raises Ethical, Legal Questions
Marty Makary's role in helping negotiation the Trump Administration's second "most favored nations" drug pricing deal is raising concerns as the Trump team has suggested it would use drug pricing as a...
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