ALS United Greater New York

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!

Thank you @crow.house.gov

🏳️‍🌈 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

ALS Drug Shows Unprecedented Recovery in Patients With Rare Mutation - Neuroscience News A groundbreaking experimental therapy for a rare, aggressive form of ALS caused by FUS gene mutations has produced surprising clinical improvements in some patients, including restored mobility and ex...

ALS United Greater New York is proud to have been an early funder of this important research and a long-standing supporter of Dr. Shneider and the Eleanor and Lou Gehrig #ALS Center at Columbia University. #ALSResearch neurosciencenews.com/als-fus-neur...

YouTube video by PBS NewsHour WATCH: 'I do not know about any cuts to ALS research,' RFK Jr. tells Durbin

"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...

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

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

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

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

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

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

‘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.

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.

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.

15 ALS Nonprofits Collaborate to Form ALS United: A New Era of Innovation and Impact /PRNewswire/ -- Following a comprehensive planning process, 15 independent nonprofit organizations from around the country have formalized ALS United, an...

ALS United Greater New York is proud to be a founding member of ALS United. #ALS #MND #TogetherWeEndALS

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...

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...

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

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

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