iiinova — where your digital self keeps evolving

ALS United Greater New York @alsofgny.bsky.social · 22/07/2026

Today, the House passed the #ACTforALS Reauthorization Act. Thank you to everyone who has shared your story, participated in advocacy events, & contacted your lawmakers. Now it's the Senate's turn. Contact your Senators & urge them to support ACT for ALS:http://qrco.de/ActforALS

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ALS United Greater New York @alsofgny.bsky.social · 10/06/2025

The NYS ALS Registry bill has passed the legislature & awaits @GovKathyHochul's signature. With CDC’s #ALS Registry at risk in the federal budget, NY is taking action! Huge thanks to @Sen. Scarcella-Spanton & Asm. Stern & all advocates!

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ALS United Greater New York @alsofgny.bsky.social · 02/06/2025

🏳️‍🌈 10 years ago, marriage equality became law thanks to Jim Obergefell & John Arthur who were partners for 20+ years. After John’s ALS diagnosis, they married in Maryland in 2013. They fought for spousal recognition, and Jim took the case to SCOTUS—and won. John died 3 months later. #ALS #LoveIsLove

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ALS United Greater New York @alsofgny.bsky.social · 21/05/2025

"Cutting medical research is giving up on the future — and we can’t do that,” said Sen. Durbin. Thank you Sen. Durbin & the #ALS Caucus. We must protect & increase ALS research funding. www.youtube.com/watch?v=zHca...

youtube.com

WATCH: 'I do not know about any cuts to ALS research,' RFK Jr. tells Durbin

YouTube video by PBS NewsHour

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ALS United Greater New York @alsofgny.bsky.social · 01/05/2025

May is #ALSAwarenessMonth a time to honor resilience, fuel progress, and stand united. This month, we shine a light on those living with the disease, their caregivers & families, and push forward with urgency toward better treatments & a cure. Together, We End ALS! #ALS

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ALS United Greater New York @alsofgny.bsky.social · 28/04/2025

URGENT: April 30 deadline! Ask your Rep to sign the FY2026 ALS Research funding letter supporting $375M for research that benefits patients & veterans. 2 mins to take action! app.oneclickpolitics.com/campaign-pag... #TogetherWeEndALS #ALSUnited

app.oneclickpolitics.com

FY2026 ALS Research Appropriations Dear Colleague Letter

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ALS United Greater New York @alsofgny.bsky.social · 13/03/2025

URGENT: Protect #ALS Research Funding! Congress may slash CDMRP funding in the CR, halting critical ALS research. ALS cases could rise 70% by 2030, & veterans face 2x the risk. We must act NOW! Tell your Senators to protect funding! als-ny.org/the-threat-t... #ALSResearch

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ALS United Greater New York @alsofgny.bsky.social · 10/03/2025

We are deeply concerned about proposed CR, which would cut FY25 funding for CDMRP by 57%—from $1.5 billion to $650M. This devastating cut would severely impact critical ALS research, slowing progress toward new treatments. We urge Congress to protect this vital funding. #ALSResearch #ALS #ALSUnited

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ALS United Greater New York @alsofgny.bsky.social · 05/03/2025

Musicians United for ALS – Concert Supporting ALS United Greater NY 4/15 #PattySmyth, #PaulShaffer, #RobThomas and more!* Hosted by: #VincentPastore. In honor of Wayne Warnecke, acclaimed music producer battling ALS. Proceeds go 2 ALS United Greater NY bit.ly/MusiciansUni... *Artist subject 2 change

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ALS United Greater New York @alsofgny.bsky.social · 26/02/2025

In May @iamals.bsky.social plants 6,000 flags on the Mall. Each flag represents someone affected by #ALS —those living with the disease, carrying a gene associated with it, or whom we have lost. Proud to be a community sponsor of this event. Add your or your loved one's name ➡ bit.ly/IAMALSFlags

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ALS United Greater New York @alsofgny.bsky.social · 24/02/2025

We mourn the loss of legendary Roberta Flack. Her soulful voice & timeless hits like "Killing Me Softly with His Song" and "The First Time Ever I Saw Your Face" have left an indelible mark. She will also be remembered as a trailblazer, breaking barriers & dedicating herself to education & advocacy.

nydailynews.com

‘Killing Me Softly” Roberta Flack dies at 88 after ALS battle

A cause of death was not revealed, but Flack was diagnosed with amyotrophic lateral sclerosis (ALS) in August 2022 and announced months later she was unable to sing.

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ALS United Greater New York @alsofgny.bsky.social · 14/02/2025

Funding for #NIH is being slashed, putting critical neuromuscular disease research at risk. These cuts target essential expenses that keep labs running. Without this support labs will shut and clinical trials will stop. #ALS research is verging on breakthroughs—this is NOT the time to cut funding.

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ALS United Greater New York @alsofgny.bsky.social · 31/01/2025

Walk ALS is the no. 1 way to unite and fundraise for those living with ALS. Each year, fundraising through our Walk ALS program drives bold and urgent innovation as we march together toward a cure for #ALS. Join us this spring in NYC, Westchester, or North Jersey! ➡ als-ny.org/get-involved...

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ALS United Greater New York @alsofgny.bsky.social · 03/01/2025

Yesterday, President Biden signed the Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act, into law. This package of bills will assist veterans living with #ALS. Your advocacy works! Sign up to be an advocate in 2025 at als-ny.org/advocacy/bec...

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ALS United Greater New York @alsofgny.bsky.social · 17/12/2024

U.S. Veterans are 2x more likely to develop ALS than non-veterans. This bill expanding caregiver benefits & home-based care has passed Congress and awaits the President's signature. Thank you to all the advocates & elected officials who worked to make this happen! #ALS #Veterans

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ALS United Greater New York @alsofgny.bsky.social · 03/12/2024

It’s #GivingTuesday! All donations fuel critical research, local compassionate care, and our fight for a cure. Give & Share! Together, we can make a difference! Donate Now ➡ bit.ly/ALSUGNYGiveTues - After you give, tag 5 friends and challenge them to do the same! #ALSUnited #ALS #TogetherWeEndALS

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ALS United Greater New York @alsofgny.bsky.social · 19/11/2024

Your advocacy matters! The bipartisan Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act has officially passed the House! It's time for the Senate to pass this crucial legislation to ensure veterans receive the care and support they deserve. #ALS #Veterans

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