@KickALS

Here we go again with the “ALS doesn’t cause pain”….

Trump plan would limit disability benefits for older Americans Trump administration officials are considering eliminating age as a factor in deciding whether someone is capable of working.

www.washingtonpost.com/politics/202...

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/

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.

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...

‘Extremely disturbing and unethical’: new rules allow VA doctors to refuse to treat Democrats, unmarried veterans Trump order allows VA staff to decline providing healthcare to patients based on political affiliation or marital status

www.theguardian.com/us-news/2025...

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.

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...

YouTube video by Kelli628 Medical research funding is not a pawn

Please take time to listen & share Kelli’s message ….

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

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.

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/

The people of Sackets Harbor—and especially the school administrators and teachers—should serve as an example for us all that resistance can work. You do not need to comply in advance. The Trump administration is powerful, but not invincible. This story is a reminder to journalists that reporting on things happening in the smallest places can have the largest impact. My hats off to the local journalists who first made noise about this miscarriage of justice. I feel fortunate that I could help amplify it, and that we can celebrate this small but powerful victory. And we can rest a little easier knowing the third grader will finally get to see the welcome home banner hung by classmates with love.

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...

MND Warriors Embark On Extraordinary Excursion To Taiping The excursion aims to create lasting memories while raising awareness about MND and advocating for accessibility for the disabled in tourism.

codeblue.galencentre.org/2025/04/mnd-...

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?

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...

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...

An ‘Administrative Error’ Sends a Maryland Father to a Salvadoran Prison The Trump administration says it mistakenly deported an immigrant with protected status but that courts are powerless to order his return.

www.theatlantic.com/politics/arc...

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...

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...

😂

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.

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

From 2010 to 2016 (latest data I have ), NIH research contributed to EVERY drug approved by the FDA

An Attack on “Woke” Science Or an Attack on All Science? The Trump administration's attempt to cancel science

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-...

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

🚨 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

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!

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.

You suck

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...

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 are very concerned about the proposed budget cuts at the NIH and the DOD that could impact ALS research. Our Board of Trustees and staff are taking to Capitol Hill on Wednesday to urge Congress to continue to fund ALS research.