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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
526 posts 271 followers 388 following
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Posts 47 Comments 2

Oh, no… ALS stinks.

submitted 3 minutes ago • 0 comments

Many Americans are pinching pennies, exhausted by high prices and stubborn inflation. The well-off are spending with abandon. The top 10% of earners in the U.S. now account for 49.7% of all spending.

submitted 1 hour ago • 25 comments

There are so many reasons university endowments can't make up for the dramatic cuts the Trump administration has planned for science. Here are a few. Thanks to @donmoyn.bsky.social for the platform.

submitted 35 minutes ago • 10 comments

Terrible news about lack of NIH grant payments despite court orders

submitted 27 minutes ago • 0 comments

Exclusive, from @matthewherper.bsky.social at @statnews.com www.statnews.com/2025/02/24/p...

submitted 27 minutes ago • 0 comments

Trump administration rehires some FDA employees it fired www.statnews.com/2025/02/23/f... via @lizzylawrence.bsky.social

submitted 16 hours ago • 3 comments

Thanks to @chrischirp.bsky.social at University College London for compiling this list. Have to say, our colleagues in the UK are stepping up to help. They have our backs. christinapagel.substack.com/p/how-to-fig...

submitted 1 day ago • 3 comments

Please pray for Papa Francesco

submitted 1 day ago • 0 comments

Does your child want to go to college, want to go to med or grad school? The new cures for diseases, new technologies that we depend on come out of universities. #Trump, #Musk, #Vought are now killing higher education. If you haven't been paying attention, this would be a good time to wake up.

submitted 2 days ago • 9 comments

It looks like more universities (Pitt/Penn) are freezing, pausing, even rescinding admissions offers since we wrote this story last week. (But some, like USC, are now resuming offers) Please reply to this or repost with that info if you know of more. www.statnews.com/2025/02/19/t...

submitted 1 day ago • 3 comments

Another school curtails admissions, even offers already made. This is on #Trump, #Musk and #Vought. Time to fight back. www.thedp.com/article/2025...

submitted 2 days ago • 4 comments

A large portion of grants awarded by NIH can't be funded 4 foreseeable future due to the comms freeze by WH & a hold on submissions to the Federal Register began 1/21—because public notices 15 days before upcoming meetings are required by law 2b posted www.thetransmitter.org/funding/fede... #medsky

submitted 2 days ago • 1 comment

"Would Louisiana doctor and Sen. Bill Cassidy, who provided a decisive vote for RFK Jr.’s confirmation, care to comment?" www.wsj.com/opinion/rfk-...

submitted 2 days ago • 0 comments

Nancy By Ernie Bushmiller February 21,1957

submitted 2 days ago • 13 comments

Parents of rare disease kids are relentless advocates. Perhaps they will be the ones brave enough to call out the dismantling of productive parts of HHS. What they are doing to it is nuts.

submitted 2 days ago • 0 comments

There was a reason rare disease day occurred at the end of a month featuring an occasional leap day. This is a huge deal and understanding what NIH does (did?) in rare disease research is critical.

submitted 2 days ago • 0 comments

"After two hours of arguments from the Trump administration & three sets of plaintiffs, a federal judge on Friday kept in place an order blocking the Trump administration from implementing a cap on how much indirect costs the NIH pays grant recipients." www.statnews.com/2025/02/21/t...

submitted 2 days ago • 0 comments

This is going to go on at many universities - the uncertainty will lead to fewer graduate programs. It will hobble scientific research which appears to be the goal.

submitted 2 days ago • 10 comments

The Trump administration blocked key parts of the federal government’s apparatus for funding biomedical research, effectively halting progress on much of the country’s future work on illnesses like cancer and addiction despite a federal judge’s order to release grant money.

submitted 2 days ago • 121 comments

🚨 WANT TO HELP US STAND UP FOR SCIENCE? 🚨 Here's a little update on where we're currently at with the planning process! Is your state red or grey & you want to see an event happen? Fill out our volunteer form or share with a friend! airtable.com/app4h5wUssMG... #standupforscience2025

submitted 2 days ago • 19 comments

Perfect translation from @cmorten.bsky.social

submitted 2 days ago • 1 comment

US health agencies postpone rare diseases event in an unusual move www.reuters.com/business/hea...

submitted 2 days ago • 0 comments

www.pbs.org/weta/washing...

submitted 2 days ago • 0 comments

💡📣 Want a #StandUpforScience2025 rally near you? Fill out our volunteer form if you're interested in leading it (alone or with a team)! We're a small team and don't have the bandwidth to put something together in every city, but if you want to lead, we'll help you! ☀️ ⬇️⬇️⬇️

submitted 4 days ago • 0 comments

Your silence will not protect you (image: Barbara Kruger).

submitted 3 days ago • 0 comments

Dear RAPID Registrant Thank you for registering to attend the RAPID Patients’ Day. ARPA-H will no longer hold the Patients’ Day as planned for February 25, 2025. In lieu of the virtual event, guidance materials will be posted to the RAPID Program Page at arpa-h.gov/explore-fund... when possible.

submitted 2 days ago • 0 comments

“One might ask, ‘Why are they trying to destroy the science training pipeline?’” that professor said. “To what end?”

submitted 2 days ago • 0 comments

Why this flu season is so severe www.beckershospitalreview.com/public-healt... "Low vaccination rates may also be at play..." "Experts suggest misinformation about vaccines and post-COVID-19 vaccine fatigue may be contributing factors..."

submitted 3 days ago • 1 comment

Fearing Retaliation, Loss of Funding, Many Nonprofits Stay Quiet on Trump The flood-the-zone strategy coming from the White House has had a chilling effect on nonprofits, according to a new survey from the Communications Network. www.philanthropy.com/article/fear... altering their external comms

submitted 4 days ago • 0 comments

Glad I could be of help ;-)

submitted 3 days ago • 0 comments

Tomorrow, 3 cases against NIH regarding indirect costs will have their first hearing — here’s what to look for: 🧪🩺🔬 www.statnews.com/2025/02/20/t...

submitted 3 days ago • 1 comment

“We have to stand up,” said Murkowski. “The ‘we’ has to be more than just me. And this is where it becomes more of a challenge.”

submitted 3 days ago • 0 comments

This is a red alert for US science, for new cures & treatments for diseases that afflict everyone in this country. This isn't "oh, it will blow over." Soon we will have reached the point of no return destroying what it has taken decades to build. WE NEED TO BE BANGING DOWN THE DOORS IN CONGRESS.

submitted 4 days ago • 5 comments

Sporadic ALS hiPSC-derived motor neurons show axonal defects linked to altered axon guidance pathways www.sciencedirect.com/science/arti...

submitted 3 days ago • 0 comments

Based on the science, diversity matters www.nature.com/articles/s43... "...science has established the importance of diversity time and time again."

submitted 3 days ago • 6 comments

register events.researchamerica.org/2025Awards/?...

submitted 4 days ago • 0 comments

Early days (a phase 1 clinical trial), but exciting work! mRNA vaccines show promise against pancreatic cancer in early trial www.nbcnews.com/health/cance... This will be, um, a challenge for antivaxx universe, especially in jurisdictions that want to ban mRNA vaccines.

submitted 4 days ago • 4 comments

Here are three things to know about electricity in 2025.

submitted 4 days ago • 0 comments

NIH has a new center to study Alzheimer's & dementia It just lost 10% of its staff to the Trump layoffs, including a top scientist in line to be the next director "These people are experts and are irreplaceable" Important reporting from @gregsargent.bsky.social newrepublic.com/article/1917...

submitted 4 days ago • 5 comments

President Trump and Elon Musk's efforts to shrink the federal government have cut off all funding to pro-democracy and human rights groups abroad, giving China an opportunity to muscle in.

submitted 4 days ago • 89 comments

Great op-ed in @detroitnews.bsky.social from the head of @mihospitalassoc.bsky.social about the importance of #Medicaid in #Michigan: www.detroitnews.com/story/opinio...

submitted 4 days ago • 1 comment

Two renowned ethicists on the abrupt cancellation of clinical trials funded by USAID. www.statnews.com/2025/02/16/u...

submitted 7 days ago • 0 comments

More from the Boston Rally for Healthcare, Research and Jobs. Labor stands with science; science stands with labor.

submitted 4 days ago • 1 comment

A friend’s family took their kids to presidential libraries on vacations. What a wonderful way to see America and Americans. And now this. www.washingtonpost.com/style/power/...

submitted 4 days ago • 0 comments

“There were a number of employees who commented that they had nothing but exemplary performance reviews and director awards for meritorious services, so this notion that they were being let go [for poor performance] was ludicrous.” www.wired.com/story/nation...

submitted 4 days ago • 0 comments

Jay Bhattacharya, nominated to lead the National Institutes of Health, opposed most covid mandates. Without an honest public debate about what worked and what didn’t, public health experts say, we’re even less prepared for the next pandemic. kffhealthnews.org/news/article...

submitted 4 days ago • 0 comments

Another way they are disrupting research. Read this. www.thetransmitter.org/funding/fede...

submitted 5 days ago • 2 comments