Reposted by @KickALS
What is BCI and how can it impact ALS care and research? 🧠
Join us July 29 at 1PM EST for our next ALS TDI Town Hall featuring Dr. Daniel Rubin of Mass General + Harvard Medical.
Register today: als.net/als-town-hall/
Join us July 29 at 1PM EST for our next ALS TDI Town Hall featuring Dr. Daniel Rubin of Mass General + Harvard Medical.
Register today: als.net/als-town-hall/
July 23, 2025 at 3:25 PM
What is BCI and how can it impact ALS care and research? 🧠
Join us July 29 at 1PM EST for our next ALS TDI Town Hall featuring Dr. Daniel Rubin of Mass General + Harvard Medical.
Register today: als.net/als-town-hall/
Join us July 29 at 1PM EST for our next ALS TDI Town Hall featuring Dr. Daniel Rubin of Mass General + Harvard Medical.
Register today: als.net/als-town-hall/
Reposted by @KickALS
Eric Dane opens up about ALS diagnosis: 'I don't think this is the end of my story' - ABC News via @ABC - abcnews.go.com/culture/stor...
Eric Dane opens up about ALS diagnosis: 'I don't think this is the end of my story'
Dane opened up about his health battle with ABC News' Diane Sawyer.
abcnews.go.com
June 14, 2025 at 9:26 PM
Eric Dane opens up about ALS diagnosis: 'I don't think this is the end of my story' - ABC News via @ABC - abcnews.go.com/culture/stor...
Reposted by @KickALS
Reposted by @KickALS
NIH is cutting research on mRNA vaccines.
NIH Director Jay Bhattacharya signed a petition calling for a halt on the vaccines & said many people view it as a "bad platform."
But in 2021 he wrote a white paper praising the technology as an example of the type of breakthrough science NIH should fund.
NIH Director Jay Bhattacharya signed a petition calling for a halt on the vaccines & said many people view it as a "bad platform."
But in 2021 he wrote a white paper praising the technology as an example of the type of breakthrough science NIH should fund.
June 9, 2025 at 12:55 PM
NIH is cutting research on mRNA vaccines.
NIH Director Jay Bhattacharya signed a petition calling for a halt on the vaccines & said many people view it as a "bad platform."
But in 2021 he wrote a white paper praising the technology as an example of the type of breakthrough science NIH should fund.
NIH Director Jay Bhattacharya signed a petition calling for a halt on the vaccines & said many people view it as a "bad platform."
But in 2021 he wrote a white paper praising the technology as an example of the type of breakthrough science NIH should fund.
Reposted by @KickALS
This ALS Awareness Month, the ALS Therapy Development Institute (ALS TDI), in partnership with Her ALS Story and hosted by Sunny Brous of SunnyStrong, invites you to participate in the 4th Annual Fight ALS Film Fest. www.als.net/news/fight-a...
April 25, 2025 at 7:17 PM
This ALS Awareness Month, the ALS Therapy Development Institute (ALS TDI), in partnership with Her ALS Story and hosted by Sunny Brous of SunnyStrong, invites you to participate in the 4th Annual Fight ALS Film Fest. www.als.net/news/fight-a...
Reposted by @KickALS
Please take time to listen & share Kelli’s message ….
Medical research funding is not a pawn
YouTube video by Kelli628
youtu.be
April 19, 2025 at 11:38 PM
Please take time to listen & share Kelli’s message ….
Reposted by @KickALS
NIH freezes funds to Harvard and four other universities, but can’t tell them | Science | AAAS www.science.org/content/arti...
the agency told Harvard researcher David Walt to immediately stop work on his $650,000 contract studying diagnostics and treatments for amyotrophic lateral sclerosis.
the agency told Harvard researcher David Walt to immediately stop work on his $650,000 contract studying diagnostics and treatments for amyotrophic lateral sclerosis.
NIH freezes funds to Harvard and four other universities, but can’t tell them
Move follows broader White House attack on Harvard funding and stop-work orders to contractors
www.science.org
April 19, 2025 at 1:14 PM
NIH freezes funds to Harvard and four other universities, but can’t tell them | Science | AAAS www.science.org/content/arti...
the agency told Harvard researcher David Walt to immediately stop work on his $650,000 contract studying diagnostics and treatments for amyotrophic lateral sclerosis.
the agency told Harvard researcher David Walt to immediately stop work on his $650,000 contract studying diagnostics and treatments for amyotrophic lateral sclerosis.
Reposted by @KickALS
On May 6th, join ALS TDI and Her ALS Story (HAS) for Why Me? Identifying ALS Causes: An important discussion exploring the potential causes of ALS. Hear personal stories from HAS members and discuss the factors they believe could contribute to ALS. www.als.net/als-town-hall/
April 15, 2025 at 7:18 PM
On May 6th, join ALS TDI and Her ALS Story (HAS) for Why Me? Identifying ALS Causes: An important discussion exploring the potential causes of ALS. Hear personal stories from HAS members and discuss the factors they believe could contribute to ALS. www.als.net/als-town-hall/
Reposted by @KickALS
New — ICE will release the mother and children they shackled and unlawfully abducted from Sackets Harbor, NY in late March after relentless pressure from the town.
I write how the incredible outcome of this horrifying story should give fuel us to fight back: www.thehandbasket.co/p/sackets-ha...
I write how the incredible outcome of this horrifying story should give fuel us to fight back: www.thehandbasket.co/p/sackets-ha...
April 7, 2025 at 8:16 PM
New — ICE will release the mother and children they shackled and unlawfully abducted from Sackets Harbor, NY in late March after relentless pressure from the town.
I write how the incredible outcome of this horrifying story should give fuel us to fight back: www.thehandbasket.co/p/sackets-ha...
I write how the incredible outcome of this horrifying story should give fuel us to fight back: www.thehandbasket.co/p/sackets-ha...
Reposted by @KickALS
Sen. Booker’s speech was a substantive and moral account of this moment. He did not read the phone book. He did not babble.
For 24 hours @booker.senate.gov laid out a detailed, damning, and critical narrative of truth, history, politics, morality, humanity.
What will you do?
For 24 hours @booker.senate.gov laid out a detailed, damning, and critical narrative of truth, history, politics, morality, humanity.
What will you do?
April 1, 2025 at 11:46 PM
Sen. Booker’s speech was a substantive and moral account of this moment. He did not read the phone book. He did not babble.
For 24 hours @booker.senate.gov laid out a detailed, damning, and critical narrative of truth, history, politics, morality, humanity.
What will you do?
For 24 hours @booker.senate.gov laid out a detailed, damning, and critical narrative of truth, history, politics, morality, humanity.
What will you do?
Reposted by @KickALS
Can Medicaid beneficiaries seek relief in federal court to enforce Medicaid’s “free-choice of provider provision,” which allows Medicaid beneficiaries to seek care from any provider that is qualified and willing to participate in the program? @kffhealthnews.org www.kff.org/womens-healt...
What's at Stake in the Supreme Court Case Medina v. Planned Parenthood South Atlantic? | KFF
In this brief, we describe Medina v. Planned Parenthood South Atlantic, the Medicaid policies underlying it, and potential implications for Medicaid beneficiaries’ access to reproductive health servic...
www.kff.org
April 2, 2025 at 12:16 PM
Can Medicaid beneficiaries seek relief in federal court to enforce Medicaid’s “free-choice of provider provision,” which allows Medicaid beneficiaries to seek care from any provider that is qualified and willing to participate in the program? @kffhealthnews.org www.kff.org/womens-healt...
Reposted by @KickALS
Whether you want to do an online tour through our virtual lab model or come see us in Watertown, MA, we would love to show you our space and the work happening at ALS TDI. You can schedule a tour here: www.als.net/als-research...
Schedule a Tour | ALS Therapy Development Institute
Visit the world's foremost drug discovery lab focused solely on ALS. Schedule a tour at the ALS Therapy Development Institute (ALS TDI) lab in Cambridge, MA to learn more about our cutting-edge ALS re...
www.als.net
March 31, 2025 at 2:26 PM
Whether you want to do an online tour through our virtual lab model or come see us in Watertown, MA, we would love to show you our space and the work happening at ALS TDI. You can schedule a tour here: www.als.net/als-research...
Reposted by @KickALS
For people w ALS, being able to apply for SSDI and be processed quickly is essential. The ALS Clock does not wait.
wapo.st/4hM5MAn
wapo.st/4hM5MAn
Long waits, waves of calls, web crashes: Social Security is breaking down
A flood of cuts led by Elon Musk has sent the agency into chaos as a new commissioner prepares to take charge.
wapo.st
March 25, 2025 at 11:37 AM
For people w ALS, being able to apply for SSDI and be processed quickly is essential. The ALS Clock does not wait.
wapo.st/4hM5MAn
wapo.st/4hM5MAn
Reposted by @KickALS
From 2010 to 2016 (latest data I have ), NIH research contributed to EVERY drug approved by the FDA
March 22, 2025 at 10:44 AM
From 2010 to 2016 (latest data I have ), NIH research contributed to EVERY drug approved by the FDA
Reposted by @KickALS
I have a new Substack out today. It talks about the infamous National Science Foundation's "banned words" list and how the administration's cancellation of "woke" science and DEI initiatives is a thin smokescreen to undermine science & research more broadly. substack.com/home/post/p-...
An Attack on “Woke” Science Or an Attack on All Science?
The Trump administration's attempt to cancel science
substack.com
March 13, 2025 at 6:15 PM
I have a new Substack out today. It talks about the infamous National Science Foundation's "banned words" list and how the administration's cancellation of "woke" science and DEI initiatives is a thin smokescreen to undermine science & research more broadly. substack.com/home/post/p-...
Reposted by @KickALS
This week, the U.S. House passed a Continuing Resolution that includes a devastating 57% cut to the Department of Defense’s Congressionally Directed Medical Research Programs. This reduction would severely limit funding for critical research into diseases like #ALS.
Our statement: buff.ly/BpT2sUj
Our statement: buff.ly/BpT2sUj
March 14, 2025 at 7:24 PM
This week, the U.S. House passed a Continuing Resolution that includes a devastating 57% cut to the Department of Defense’s Congressionally Directed Medical Research Programs. This reduction would severely limit funding for critical research into diseases like #ALS.
Our statement: buff.ly/BpT2sUj
Our statement: buff.ly/BpT2sUj
Reposted by @KickALS
🚨 Everyone needs to call their Dem Senator right now. They are starting to cave.
Tell them:
1. Vote NO on Cloture
AND
2. Vote NO on the Republican spending bill.
Don’t let them pivot to reconciliation. GOP doesn’t need Dem votes on that and they know it.
TODAY is the showdown.
🤳🏽: (202) 224-3121
Tell them:
1. Vote NO on Cloture
AND
2. Vote NO on the Republican spending bill.
Don’t let them pivot to reconciliation. GOP doesn’t need Dem votes on that and they know it.
TODAY is the showdown.
🤳🏽: (202) 224-3121
March 12, 2025 at 2:19 PM
🚨 Everyone needs to call their Dem Senator right now. They are starting to cave.
Tell them:
1. Vote NO on Cloture
AND
2. Vote NO on the Republican spending bill.
Don’t let them pivot to reconciliation. GOP doesn’t need Dem votes on that and they know it.
TODAY is the showdown.
🤳🏽: (202) 224-3121
Tell them:
1. Vote NO on Cloture
AND
2. Vote NO on the Republican spending bill.
Don’t let them pivot to reconciliation. GOP doesn’t need Dem votes on that and they know it.
TODAY is the showdown.
🤳🏽: (202) 224-3121
Reposted by @KickALS
Ok, somebody must know the answer to this...
My understanding is that the House cut CDMRP frm $1.51B to $650M – a 57% cut from the FY24 level.
Since ALS has a separate line item, did we lose all/57%/none of our $40M ??? Anyone?
We'll be better advocates if somebody can explain the details!
My understanding is that the House cut CDMRP frm $1.51B to $650M – a 57% cut from the FY24 level.
Since ALS has a separate line item, did we lose all/57%/none of our $40M ??? Anyone?
We'll be better advocates if somebody can explain the details!
March 12, 2025 at 5:14 PM
Ok, somebody must know the answer to this...
My understanding is that the House cut CDMRP frm $1.51B to $650M – a 57% cut from the FY24 level.
Since ALS has a separate line item, did we lose all/57%/none of our $40M ??? Anyone?
We'll be better advocates if somebody can explain the details!
My understanding is that the House cut CDMRP frm $1.51B to $650M – a 57% cut from the FY24 level.
Since ALS has a separate line item, did we lose all/57%/none of our $40M ??? Anyone?
We'll be better advocates if somebody can explain the details!
Reposted by @KickALS
Elon Musk is pushing to end phone services at Social Security, which 73 million retired and disabled Americans rely on to apply for and access their earned government benefits.
March 12, 2025 at 4:33 PM
Elon Musk is pushing to end phone services at Social Security, which 73 million retired and disabled Americans rely on to apply for and access their earned government benefits.
Reposted by @KickALS
Super happy to announce the latest work from my lab together with Hemali Phatnani @nygenome.org & NYGC ALS Consortium!
We've combined ALS patient profiling (100s!), ML classifiers and matched bulk/single-cell data to dive into ALS Molecular Subtypes
#NIHfundedResearch
www.cell.com/cell-reports...
We've combined ALS patient profiling (100s!), ML classifiers and matched bulk/single-cell data to dive into ALS Molecular Subtypes
#NIHfundedResearch
www.cell.com/cell-reports...
ALS molecular subtypes are a combination of cellular and pathological features learned by deep multiomics classifiers
O’Neill et al. present a deep exploration of molecular subtypes in ALS postmortem
tissues from the NYGC ALS Consortium. Matched bulk and single-cell profiles demonstrate
that ALS subtypes are a combin...
www.cell.com
March 10, 2025 at 9:49 PM
Super happy to announce the latest work from my lab together with Hemali Phatnani @nygenome.org & NYGC ALS Consortium!
We've combined ALS patient profiling (100s!), ML classifiers and matched bulk/single-cell data to dive into ALS Molecular Subtypes
#NIHfundedResearch
www.cell.com/cell-reports...
We've combined ALS patient profiling (100s!), ML classifiers and matched bulk/single-cell data to dive into ALS Molecular Subtypes
#NIHfundedResearch
www.cell.com/cell-reports...