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ALSUnitedGNY Profile
ALSUnitedGNY

@ALSofGNY

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Following
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ALS United Greater New York. Care. Serving those living with ALS and their families in NYC, Long Island, Lower & Mid-Hudson Valley, and Northern & Central NJ.

New York, NY
Joined July 2008
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@ACSCAN_NY
ACS CAN New York
12 days
100 patient, provider and professional organizations are calling for @CarlHeastieNY @AndreaSCousins @LizKrueger @JGPretlow @AmyPaulin @NYSenatorRivera and the NYS Legislature to preserve Medicaid patient access to #biomarker testing. #FightCancerNY
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@ALSofGNY
ALSUnitedGNY
19 days
TY @ChrisCoons, @lisamurkowski, @janschakowsky & @RepBrianFitz for introducing the #ALSBetterCareAct. When ALS clinics are underfunded, families face longer waits. This bill helps clinics so people living with ALS & their loved ones can keep accessing coordinated care. #ALSUnited
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@ALSofGNY
ALSUnitedGNY
24 days
Last night’s @NYIslanders win showed what happens when we rally together. Join us 4/9 as we team up with the NY Islanders to support the ALS community during their game vs. the Maple Leafs. Get tickets: https://t.co/nJaE3e5i8c #Hockey #ALS #TogetherWeEndALS
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@ALSofGNY
ALSUnitedGNY
1 month
Today, Gov. Murphy signed S4030 into law, creating an #ALS registry improving research while protecting privacy. This follows NY’s similar law & reflects strong regional momentum. TY to all the advocates who wrote their legislators. TY sponsors @vingopal, @Troy4NJ7, and @aswmccoy
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@ALSUnitedCT
ALS United Connecticut
2 months
This week, #ALSUnitedCT and @ALSofGNY Care Services teams met to share ideas, strengthen collaboration, and discuss ALS-specific programs and the shared needs of the communities we serve. Together, we’re building stronger support for people living with ALS and their families! 🧡
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@youralsnetwork
ALS Network
2 months
Maximizing research impact through a centralized program facilitated by the ALS Network, @ALSofGNY is helping accelerate new approaches in ALS treatment, prevention, and understanding. These efforts pool dollars with 11 other ALS United member organizations to fund a robust
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@ALSofGNY
ALSUnitedGNY
3 months
Thank you for all you are doing!
@QurAlisCo
QurAlis
3 months
QurAlis was proud to sponsor the @ALSofGNY Lou Gehrig Legacy Gala 2025. QurAlis expresses sincerest gratitude to ALS United Greater New York for its tireless efforts to end ALS. Congratulations to QurAlis CEO and founder @RoetKasper for receiving this year's Champion Award and to
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@ALSofGNY
ALSUnitedGNY
3 months
On Tuesday, @SlangsOnSports received the Iron Horse Award at our Lou Gehrig Legacy Gala—an honor that perfectly fits her strength and spirit. Honorees also included Yankees ace @GerritCole45, Tom Pulley, and QurAlis CEO Kasper Roet. Thank you @MLB! #ALS
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mlb.com
NEW YORK -- On May 2, 1939, Lou Gehrig's famous streak ended after 2,130 games when he took himself out of the Yankees’ lineup. Exactly fifty-four years later, Sarah Langs was born. Their stories...
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@ALSofGNY
ALSUnitedGNY
3 months
What a great night! Thank you to everyone who came out and supported people living with ALS. #ALSUnited
@YESNetwork
YES Network
3 months
Gerrit and Amy Cole attending The Lou Gehrig Legacy Gala with @ALSofGNY Gerrit will receive the Lou Gehrig Sports Award.
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@ALSofGNY
ALSUnitedGNY
3 months
Thank you, @JeremySchaap - What a great night!
@JeremySchaap
Jeremy Schaap
3 months
With two sports tv legends--Weinbaum and Costas--at the @ALSofGNY Lou Gehrig gala last night. @GerritCole45 and @SlangsOnSports were among those honored.
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@ALSofGNY
ALSUnitedGNY
4 months
Join us 11/11 where we’ll honor @KasperRoet, PhD, founder & CEO of @QurAlisCorp, with this year’s Champion Award! A visionary neuroscientist, Kasper’s groundbreaking work in gene & stem cell–based #ALS therapies continues to inspire hope. Tix - https://t.co/n40eaMcaaA
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@ALSofGNY
ALSUnitedGNY
4 months
Join us for The Lou Gehrig Legacy Gala on Nov. 11 in NYC, honoring Gerrit Cole, 6x MLB All-Star & 2023 AL Cy Young winner, with this year’s Lou Gehrig Sports Award. Celebrate his excellence on the field! 🎟️ https://t.co/n40eaMcI08
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@ALSofGNY
ALSUnitedGNY
6 months
Congress is moving #ALS research funding forward, but the final budget isn’t done. Now’s the time to act: urge your Members of Congress to protect ALS funding for 30,000 Americans living with ALS & their families. Progress is within reach—let’s keep going. https://t.co/FyMW53ZNdH
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@ALSofGNY
ALSUnitedGNY
8 months
ALS United Greater New York joined 40+ orgs urging the U.S. Senate to reject dangerous cuts to Medicaid, Medicare & home care services. These changes would raise costs, gut programs, and limit access to care for people with #ALS. Read the letter - https://t.co/vvrkzyhCe4
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@ALSofGNY
ALSUnitedGNY
9 months
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 @NYSenator_JSS & Asm. Steve Stern & all advocates!
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@ALSofGNY
ALSUnitedGNY
9 months
Thank you @Yankees and fans!
@Yankees
New York Yankees
9 months
Prior to tonight's game, we honored some of the most dedicated and inspiring local organizations in the fight against ALS: @iamalsorg, @HerALSStory, and @ALSofGNY. Each of these organizations embodies the spirit of resilience and community that Lou Gehrig himself championed 💙
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@RepJasonCrow
Rep. Jason Crow
9 months
ALS affects thousands of American families & disproportionately impacts veterans. It’s time we make serious investments in finding a cure. I’m leading a bipartisan effort to protect & expand ALS research nationwide. 
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crow.house.gov
WASHINGTON — Congressman Jason Crow (D-CO-06) is leading a bipartisan effort to support critical medical research funding for Americans living with Amyotrophic Lateral Sclerosis (ALS), a fatal...
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@ALSofGNY
ALSUnitedGNY
9 months
Anderson asked, "Part of your research... deals with military veterans developing ALS...What would be the impact of these cuts, or any cuts, on that work do?" It will stop it" said Marc Weisskopf, professor at Harvard's T.H. Chan School of Public Health on @AC360 #ALSResearch
@AC360
Anderson Cooper 360°
9 months
"It poses a tremendous threat to public health": Marc Weisskopf, professor in the environmental health department of Harvard's T.H. Chan School of Public Health, talks about the impact of President Trump's funding cuts on university research.
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@ALSofGNY
ALSUnitedGNY
9 months
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. https://t.co/sCq67UFCvU #ALS
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neurosciencenews.com
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...
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@ALSofGNY
ALSUnitedGNY
9 months
"Cutting medical research is giving up on the future. You can't do that... this research gives them hope to live another day." Thank you @SenatorDurbin & the ALS Caucus. We must protect #ALS research!
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