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ALS Advocacy

@alsadvocacy.bsky.social
389 followers 422 following 2K 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. x.com/alsadvocacy

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ALS Advocacy @alsadvocacy.bsky.social · 06/10/2026
Sunday. Be there or be square.
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ALS Advocacy @alsadvocacy.bsky.social · 06/10/2026
ALS advocacy is not fun advocacy. The loss of the people you work with and friends you make is relentless. It's the reality of ALS. It is heartbreaking work, but that is why it is so necessary.
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ALS Advocacy @alsadvocacy.bsky.social · 06/10/2026
Sometimes I read a message and have to read it two more times since I don't want to really see what it says. ALS is a stinking disease.
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ALS Advocacy @alsadvocacy.bsky.social · 05/10/2026
bioengineer.org/molecular-ch...
bioengineer.org
Molecular Chaperones Keep ALS Protein Droplets From Hardening Into Disease
Inside every motor neuron, proteins are constantly condensing into tiny liquid droplets and then dissolving again, a process so fast and so quiet that most of biology ignored it until recently. A
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ALS Advocacy @alsadvocacy.bsky.social · 05/10/2026
bioengineer.org/spinal-fluid...
bioengineer.org
Spinal Fluid Inflammatory Proteins Reveal Why ALS Progresses at Different
Researchers profiling inflammatory proteins in cerebrospinal fluid have identified a signature, including SIRT2 and MMP-1, that distinguishes slow from fast disease progression in ALS.
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ALS Advocacy @alsadvocacy.bsky.social · 05/10/2026
southfloridahospitalnews.com/2026/10/04/m...
southfloridahospitalnews.com
Mayo Clinic researchers report early results from therapy designed for a single patient with rare genetic form of ALS  | Florida Hospital News and Healthcare Report
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ALS Advocacy @alsadvocacy.bsky.social · 05/10/2026
www.mybuckhannon.com/buckhannon-n...
mybuckhannon.com
Buckhannon nonprofit to offer up to $4,000 a year for West Virginians with ALS
West Virginians living with ALS can apply starting November 1 for up to $4,000 a year from The S.E.T.H. Project for equipment, home changes, medical supplies and qualified caregiver wages.
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Reposted by ALS Advocacy
L Brielmaier @lynnbr2.bsky.social · 04/10/2026
Their  studies support further investigation of TBK1 augmentation as a therapeutic strategy for preventing disease caused by UBQLN2 mutations. TBK1 overexpression reduces neuronal loss in the P497S UBQLN2 mouse model of ALS/FTD. www.sciencedirect.com/science/arti...
sciencedirect.com
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Reposted by ALS Advocacy
L Brielmaier @lynnbr2.bsky.social · 05/10/2026
Oct. 19 Technical Assistance Webinar- RFA-NS-26-001: Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required) www.grants.gov/search-resul... Proposals due November 10th.
grants.gov
Lock
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ALS Advocacy @alsadvocacy.bsky.social · 04/10/2026
wapo.st/3VpsRmR
wapo.st
Why you should think about getting your flu shot right now
Flu is surging unusually early in some parts of the western United States, catching doctors by surprise.
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ALS Advocacy @alsadvocacy.bsky.social · 03/10/2026
www.tradingview.com/news/marketb...
tradingview.com
Clene Targets Q4 FDA Filing for ALS Drug CNM-Au8, Eyes Mid-2027 Decision
Clene NASDAQ:CLNN said it plans to submit a new drug application to the U.S. Food and Drug Administration at the beginning of the fourth quarter for CNM-Au8, its investigational treatment for amyotrop...
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Reposted by ALS Advocacy
ProPublica @propublica.org · 02/10/2026
When an insurance company is deciding whether to pay for your medical treatment, it generates a file, which should contain all records associated with your case, including documents explaining why the claim was denied. You have a right to see this file. (Published May 2023)
propublica.org
Health Insurance Claim Denied? See What Insurers Said Behind the Scenes
Learn how to request your health insurance claim file, which can include details about what your insurer is saying about you and your case.
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ALS Advocacy @alsadvocacy.bsky.social · 02/10/2026
ALS stinks.
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ALS Advocacy @alsadvocacy.bsky.social · 30/09/2026
www.docwirenews.com/post/periphe...
docwirenews.com
New Biomarker Shows Promise in ALS | Rare Diseases Today
Elevated plasma peripherin is linked to motor neuron disorders, especially ALS.
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ALS Advocacy @alsadvocacy.bsky.social · 29/09/2026
A good investment of 45 minutes if you are interested in ALS clinical trials... youtu.be/4cihrPQzLTM?...
youtu.be
Understanding Clinical Trials: A Guide for the ALS Community
YouTube video by Target ALS
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ALS Advocacy @alsadvocacy.bsky.social · 29/09/2026
www.genomeweb.com/precision-me...
genomeweb.com
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ALS Advocacy @alsadvocacy.bsky.social · 29/09/2026
www.mda.org/press-releas...
mda.org
ACT for ALS Reauthorization Advances to the President After Today’s Senate Action | Muscular Dystrophy Association
Washington, D.C., Monday, September 28, 2026 – The Muscular Dystrophy Association applauds the United States Senate for passing the House’s version of the ACT for ALS (Accelerating Access to Critical ...
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ALS Advocacy @alsadvocacy.bsky.social · 29/09/2026
www.rollingstone.com/music/music-...
rollingstone.com
Robert Earl Keen's Longtime Guitarist Received an ALS Diagnosis. Texas Music Is Rallying
Guitarist Rich Brotherton received a diagnosis of ALS; Robert Earl Keen, John Baumann, and the Texas music scene are rallying behind him.
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Reposted by ALS Advocacy
Michael Warburton @michaelwarburton.bsky.social · 27/09/2026
Despite being a famous Hollywood star if you want to know what sort of person DAVID NIVEN was, the largest wreath at his funeral was from the Porters at Heathrow Airport. It read: “To the finest gentleman who ever walked through these halls. He made a Porter feel like a King.”
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ALS Advocacy @alsadvocacy.bsky.social · 28/09/2026
www.nytimes.com/2026/09/26/h...
nytimes.com
‘Zombified’ C.D.C., Hobbled by Cuts, Struggles to Fulfill Scientific Mission (Gift Article)
The agency has lost its independence and nearly a third of its staff, as Health Secretary Robert F. Kennedy Jr. and associates have tightened control.
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ALS Advocacy @alsadvocacy.bsky.social · 27/09/2026
I need a price index based on my shopping basket. Holy cow... produce has gone up a lot in the last two weeks. And how did a formerly $1 box of whole wheat pasta move up to $1.87? Eating healthy is extraordinarily expensive right now. Eating unhealthy is expensive in other ways.
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ALS Advocacy @alsadvocacy.bsky.social · 26/09/2026
It is quite refreshing when a humble and good man brings joy to so many. There is hope for humanity!
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ALS Advocacy @alsadvocacy.bsky.social · 25/09/2026
ND Neuroscience Club annual ALS walk Oct 11. The walk stops at the Grotto where students read the names of alumni/friends/relatives/subway alumni w ALS. If you would like your name or that of a loved one added to the list, please submit here. Thank you. survey.alchemer.com/s3/9012288/R...
survey.alchemer.com
Notre Dame Alumni, Family Members, Friends with ALS
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ALS Advocacy @alsadvocacy.bsky.social · 24/09/2026
simpler.grants.gov/opportunity/...
simpler.grants.gov
Opportunity Listing - Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)
Read detailed information about this funding opportunity.
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ALS Advocacy @alsadvocacy.bsky.social · 24/09/2026
www.wsj.com/health/anti-...
wsj.com
Anti-Choking Devices Are Entering America’s Schools. Do They Work?
Regulators authorized LifeVac in the U.S., but medical groups say the Heimlich maneuver and back blows are still the best methods.
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ALS Advocacy @alsadvocacy.bsky.social · 24/09/2026
www.pennmedicine.org/news/penn-an...
pennmedicine.org
Penn and Miami researchers launch study to detect ALS and frontotemporal dementia before symptoms appear with $26 million NIH grant
An effort is underway to identify biological changes that signal whether people carrying a genetic variant will develop ALS or frontotemporal dementia.
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ALS Advocacy @alsadvocacy.bsky.social · 24/09/2026
www.usatoday.com/story/sports...
usatoday.com
Darrell Waltrip diagnosed with frontotemporal degeneration, stepping away from limelight
NASCAR legend Darrell Waltrip has been diagnosed with frontotemporal degeneration. His family says it's "possible" the three-time Cup champ has CTE.
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ALS Advocacy @alsadvocacy.bsky.social · 22/09/2026
endpoints.news/three-deaths...
endpoints.news
Three deaths in China shake trust in the country's speedy clinical trial system
China’s cheap, fast and quiet system for testing cutting-edge medicines is facing scrutiny after the deaths of three people in investigator-initiated trials.
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ALS Advocacy @alsadvocacy.bsky.social · 21/09/2026
pharmatimes.com/news/axoltis...
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Reposted by ALS Advocacy
L Brielmaier @lynnbr2.bsky.social · 21/09/2026
Scientists Created Mice With Half-Human Brains. The Hybrid Animals Could Revolutionize Our Understanding of Neurological Disorders www.smithsonianmag.com/smart-news/s...
smithsonianmag.com
Scientists Created Mice With Half-Human Brains. The Hybrid Animals Could Revolutionize Our Understanding of Neurological Disorders
Our brains and their associated diseases are notoriously hard to study. So researchers developed an animal model with a cortex—the brain’s outer layer—grown from human-derived cells
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ALS Advocacy @alsadvocacy.bsky.social · 20/09/2026
wapo.st/4y7GwNZ
wapo.st
Trump and sons invest heavily in AI economy as he resists calls for slowdown
Trump’s decisions as president on one of the most consequential policy debates of his administration could affect the value of his personal investments.
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ALS Advocacy @alsadvocacy.bsky.social · 18/09/2026
duke.zoom.us/webinar/regi...
duke.zoom.us
Welcome! You are invited to join a webinar: Advancing a Home-Based Serious Illness Care Ecosystem: Recent Policy Advancements and Future Directions. After registering, you will receive a confirmation ...
Home-based serious illness care can improve access, care coordination, and quality of life for older adults with complex health and social needs, yet significant policy, regulatory, and payment challe...
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ALS Advocacy @alsadvocacy.bsky.social · 17/09/2026
We need to be paying attention in ALS Land... www.wsj.com/health/pharm...
wsj.com
Trump Administration Shift Puts This Corner of Biotech Back in Favor
With the Food and Drug Administration’s hard-liners gone, investors are rushing back into rare-disease bets.
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ALS Advocacy @alsadvocacy.bsky.social · 16/09/2026
www.nytimes.com/2026/09/15/o...
nytimes.com
Opinion | It’s Already Too Late to Stop the A.I. Threat (Gift Article)
China and the United States must work to repair the damage A.I. has done now, not look to future developments.
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ALS Advocacy @alsadvocacy.bsky.social · 16/09/2026
It's the old "are you getting worse less quickly than you would have been getting worse without the intervention?" problem... firstwordpharma.com/story/7995025
firstwordpharma.com
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ALS Advocacy @alsadvocacy.bsky.social · 16/09/2026
Wouldn't it be patient-centric if all trials showed how many seats are left? www.biospace.com/press-releas...
biospace.com
Coya Therapeutics Announces Enrollment of 100th Participant in Phase 2/3 ALSTARS Trial of COYA 302 for the Treatment of ALS
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ALS Advocacy @alsadvocacy.bsky.social · 16/09/2026
www.marketscreener.com/news/geneuro...
marketscreener.com
GeNeuro, Inc., an NRx Company is awarded European Patent Rights for GNK-301, a novel drug candidate to treat Amyotrophic Lateral Sclerosis
MIAMI - GeNeuro, Inc., , a subsidiary of NRx Pharmaceuticals, Inc. , announced the award of a European Patent entitled 'Anti HERV K Envelope Antibody and Uses Thereof.' The patent, together with two....
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ALS Advocacy @alsadvocacy.bsky.social · 15/09/2026
Should be required viewing/reading imo... www.pbs.org/weta/washing...
pbs.org
Washington Week with The Atlantic full episode, 9/4/26
Full Washington Week with the Atlantic broadcast from September 4, 2026.
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ALS Advocacy @alsadvocacy.bsky.social · 15/09/2026
Yesterday I went to a meeting related to the work of the ALL ALS natural history study. It is the big, growing, contemporary study that we have always needed, but without a reauthorized Act for ALS, all of that work could stop. Pls contact your Rep and Senators today!!!
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ALS Advocacy @alsadvocacy.bsky.social · 12/09/2026
bioengineer.org/motor-neuron...
bioengineer.org
Motor Neuron Disease Deaths Rise in the US, but Age-Adjusted Rates Hold
A sweeping new analysis of more than a quarter century of American death records has found that while the absolute number of people dying from motor neuron disease in the United States has climbed
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ALS Advocacy @alsadvocacy.bsky.social · 12/09/2026
engineering.washu.edu/news/2026/St...
engineering.washu.edu
Stress granules the focus of molecular, cellular basis of neurodegenerative diseases
Rohit Pappu, Tanja Mittag at St. Jude to continue foundational work on basis of Alzheimer’s disease, ALS, frontotemporal dementia
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ALS Advocacy @alsadvocacy.bsky.social · 11/09/2026
In the tone-deaf department, a nonprofit healthcare delivery org's foundation sends a donation solicitation themed "Honor the care you remember." This shortly after an outpatient procedure that cost six figures. The care was fine but I'm thinking they were adequately compensated.
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ALS Advocacy @alsadvocacy.bsky.social · 10/09/2026
www.biospace.com/press-releas...
biospace.com
PhenoNet, Inc. Completes Recruitment and Randomization in Phase IIb Clinical Trial Evaluating PHENOGENE-1A for Amyotrophic Lateral Sclerosis (ALS)
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ALS Advocacy @alsadvocacy.bsky.social · 09/09/2026
www.wsj.com/health/healt...
wsj.com
How to Appeal Your Health Insurer’s ‘Prior Authorization’ Denial—and Win
Patients who are denied coverage for a drug or treatment are often successful when they appeal, but it takes medical evidence and persistence.
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ALS Advocacy @alsadvocacy.bsky.social · 07/09/2026
www.nytimes.com/2026/09/04/o...
nytimes.com
Opinion | This Is the Biggest Obstacle to New Cancer Cures (Gift Article)
It is too hard for medical researchers to start clinical trials.
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ALS Advocacy @alsadvocacy.bsky.social · 06/09/2026
The Washinton punter... www.onmontlake.com/what-no-93-m...
onmontlake.com
What No. 93 means to Hunter Green
On a son honoring his father, and a legacy bigger than football.
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Reposted by ALS Advocacy
Dylan Freedman @dylanfreedman.nytimes.com · 04/09/2026
OpenAI voluntarily let three researchers from A.I. safety nonprofits investigate how its rogue A.I. agents hacked Hugging Face, leading to the most comprehensive account yet of the alarming incident — but on OpenAI's terms. My latest for NYT:
nytimes.com
How OpenAI Limited the Probe of Its Bots’ Hack of Hugging Face (Gift Article)
A nonprofit’s study of how OpenAI’s A.I. agents were able to break into Hugging Face’s infrastructure wasn’t allowed to look at the incident’s full scope.
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ALS Advocacy @alsadvocacy.bsky.social · 05/09/2026
This was a painful but extremely important half hour... www.pbs.org/weta/washing...
pbs.org
Washington Week with The Atlantic full episode, 9/4/26
Full Washington Week with the Atlantic broadcast from September 4, 2026.
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ALS Advocacy @alsadvocacy.bsky.social · 04/09/2026
The disrespect for constituents who want to talk to him is troubling. And those are not boondogle trips to DC. Many advocates pay their own way to exercise their rights. www.wsj.com/politics/pol...
wsj.com
Behind Closed Doors, John Fetterman Shows Little Interest in the Work of a Senator
The first-term senator, poised to be a possible swing vote, churns through staff as he alienates fellow Democrats and defends Israel.
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ALS Advocacy @alsadvocacy.bsky.social · 04/09/2026
wapo.st/4dedFyL
wapo.st
The dementia that often strikes in midlife — and the signs people miss
Initial symptoms of frontotemporal dementia (FTD) are easy to miss, since they can look more like a psychiatric condition than a neurodegenerative one.
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