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alsadvocacy.bsky.social
ALS Advocacy
@alsadvocacy.bsky.social
340 followers 420 following 1.4K 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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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 6h
Wharton wants their degree back.
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 6h
This is driving me nuts. They’ll pay us to take the drugs?
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Reposted by ALS Advocacy
slangsonsports.bsky.social
slangsonsports.bsky.social @slangsonsports.bsky.social · 11h
Emmet Sheehan pitched in a postseason game with “K ALS” on his glove 😭😭😭

Thank you @BCBirdBall for such amazing advocates 🫶

#EndALS

h/t eagle-eyed @tomhaberstroh.bsky.social (no pun intended)
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 6h
The groundbreaking shovel biz is the place to invest right now.
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 6h
I’m not a genius, but I paid attention in arithmetic class. . If you reduce a price 100%, the item costs 0. It’s free. What is all this talk about 600% price reductions?
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Reposted by ALS Advocacy
mcbridetd.bsky.social
Timothy McBride @mcbridetd.bsky.social · 10h
HHS employees to be fired as White House enacts mass terminations again www.statnews.com/2025/10/10/h...
HHS employees to be fired as White House enacts mass terminations it blames on shutdown
Federal health employees are being fired as the White House makes good on a promise to terminate federal employees en masse because of the shutdown.
www.statnews.com
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 13h
Troy Fields repping ALS Problem Solvers at NEALS meeting... Data on Act for ALS EAPs...
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 18h
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.
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 18h
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 19h
Time for an evaluation of what has happened related to the action imperatives... and what has not...
nap.nationalacademies.org/download/27739
Login | The National Academies Press
nap.nationalacademies.org
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 20h
metro.co.uk/2025/10/10/m...
The mistake rugby can't afford to make after Lewis Moody's MND diagnosis
metro.co.uk
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 20h
And @RollingStone needs a little @limpbroozkit
www.rollingstone.com/culture/cult...
She Got a Terminal Diagnosis. She Turned TikTok Into Her Death Diary
Creator Brooke Eby is bringing people ALS awareness on TikTok with dark humor and a face to remember.
www.rollingstone.com
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 20h
If you only read one thing today...
www.latimes.com/opinion/stor...
Contributor: How Lou Gehrig's life taught me to fight for Prop. 50
The Trump administration's deadly cuts to medical research show why California must fight back and Democrats must regain control of the federal government.
www.latimes.com
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 20h
www.arabnews.pk/node/2618329...
SFDA approves registration of Qalsody for ALS treatment
RIYADH: The Saudi Food and Drug Authority has approved the registration of Qalsody (Tofersen) for the treatment of adults with amyotrophic lateral sclerosis linked to mutations in the SOD1 gene, the S...
www.arabnews.pk
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 20h
www.biospace.com/press-releas...
Eikonizo Therapeutics Announces Publication in Brain Demonstrating Disease-Modifying Potential of Selective HDAC6 Inhibitors in Preclinical Models of ALS and FTD
www.biospace.com
Reposted by ALS Advocacy
gregggonsalves.bsky.social
Gregg Gonsalves @gregggonsalves.bsky.social · 1d
Are you in Ohio? Know someone who is? Step up. Let Senator Jon Husted hear from you!
aetiology.bsky.social
Tara C. Smith @aetiology.bsky.social · 2d
Sharing again for Ohio folks as we will be printing these Husted "thank you" cards early next week for Columbus delivery. I know many folks here have thoughts about his votes re PH & healthcare. Please take 60 seconds to write so we can share them with his staffers, and please share w/ Ohio friends!
ethicselizabeth.bsky.social
Elizabeth Lanphier @ethicselizabeth.bsky.social · 5d
Tell Jon Husted what you think about his track record on health and healthcare in #Ohio. Letters will be printed on note cards and hand delivered to his office on October 15th.
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Reposted by ALS Advocacy
lizszabo.bsky.social
Liz Szabo @lizszabo.bsky.social · 1d
A new poll looks at RFK Jr., Tylenol and vaccines, and finds growing distrust : Shots - Health News

www.npr.org/sections/sho...
59% of Americans disapprove of RFK Jr.'s moves as health secretary, a new poll says
A new poll shows trust in federal health policies is plummeting, and what — or who — people believe increasingly depends on their politics.
www.npr.org
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 1d
www.wsj.com/health/pharm...
Exclusive | Trump Excludes Generics From Big Pharma Tariff Plan
The administration has been weighing duties for months on a range of products and ingredients in a national-security tariff investigation.
www.wsj.com
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 1d
A/c on last week. This morning…
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Reposted by ALS Advocacy
gregggonsalves.bsky.social
Gregg Gonsalves @gregggonsalves.bsky.social · 1d
Commentary: A plea to protect our children www.orlandosentinel.com/2025/10/06/c...
Commentary: A plea to protect our children
Vaccination requirements kept our communities safe. Do not listen to anti-vaccine rhetoric. Do not gamble with your child’s health.
www.orlandosentinel.com
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 1d
www.redhotcyber.com/en/post/man-...
Man with amyotrophic lateral sclerosis controls robotic arm with Neuralink
A man with amyotrophic lateral sclerosis controls a robotic arm with Neuralink's neural interface, regaining independence.
www.redhotcyber.com
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 2d
Need Good Troublemakers
drdanielledatadiva.bsky.social
Danielle B @drdanielledatadiva.bsky.social · 2d
This patient-led research scorecard is worth sharing again. It outlines how to work with people with lived experience in a meaningful way, so you don't take advantage of them, inconvenience them, or otherwise behave in such a way that the collaboration and product suffer: cmss.org/wp-content/u...
cmss.org
Reposted by ALS Advocacy
hollylynchez.bsky.social
Holly Fernandez Lynch @hollylynchez.bsky.social · 2d
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...
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alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 2d
here we go...
meeting.neals.org/_files/ugd/b...
meeting.neals.org
alsadvocacy.bsky.social
ALS Advocacy @alsadvocacy.bsky.social · 3d
www.wsj.com/health/pharm...
Trump Wants to Overhaul Drug Sales. A Company Tied to His Son Stands to Benefit.
The family members of President Trump and Commerce Secretary Howard Lutnick are poised to benefit from efforts to remake the pharmaceutical industry.
www.wsj.com
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