I AM ALS
@iamalsorg
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Following
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I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on ALS.
Joined November 2018
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Breaking news: The FDA has approved AMX0035!
@US_FDA
thank you for living up to your promise of regulatory flexibility for ALS. Stay tuned for updates on access to this treatment!
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Our hearts are broken. Sandy Morris has passed. Sandy was not just part of I AM ALS – she was foundational to it. She either directly or indirectly impacted almost everything I AM ALS has done. We have no words to describe our grief and rage.
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I AM ALS is humbled to have been selected as an awardee of Mackenzie Scott’s
#YieldGivingOpenCall
. We were gifted an incredible $2 million – the largest single gift in I AM ALS’ history! Read the full press release: (1/3)
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Listen carefully 👇👇 Yes, you heard that right. $50 billion for research to cure Alzheimer’s, cancer, diabetes AND ALS.
@POTUS
, we look forward to getting to work and building a future together without ALS.
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BREAKING: the Advisory Committee has voted IN FAVOR of approval for
#AMX0035
! The final vote count was 7 Yes, 2 No.
This does not guarantee FDA approval, but it is a monumental step on the path to approval. To everyone who shared their stories: thank you!!
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Imagine belting a Taylor Swift song while playing a Taylor Swift guitar signed by
@taylorswift13
herself. Would be amazing, right?
Check out how you can make that happen.
Thank you
@RepublicRecords
and
@taylorswift13
for helping to make hope real.
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Ady was a true trailblazer. He laid the groundwork for so much of what this movement stands for and has become. He will be terribly missed.
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Ending Thanksgiving weekend on a thankful note… for all that’s been accomplished thus far, and all we WILL accomplish with the amazing support we’ve gained along the way.
COMING UP: Two years later, Lee Cowan checks in with Brian Wallach to learn how he and I Am ALS successfully advocated for the Act for ALS, securing over $100 million annually for five years to fund diverse ALS initiatives.
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I AM ALS is appalled by Cigna’s decision to not cover an FDA approved treatment for ALS that extends functionality & life. Cigna needs to immediately reverse this decision. People living with ALS deserve better and don't have time to wait while battling an always fatal disease.
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There are no words to describe the loss being felt by so many after Chris Snow's passing. Chris did so much to bring ALS to the forefront, but more importantly, he was a doting husband, a loving father, and a wonderful person.
@kelsieswrites
, thank you for sharing him with us.❤️
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Today we testified before Congress. Tomorrow we continue building the army of
#ALSChampions
. Together, we will cure ALS.
Full testimony here:
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There is no hope until there is. Today, I AM ALS launches. Today, we have more hope that a cure will be found. Together, we can. Join us:
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Breaking news: The FDA has approved Tofersen for SOD1 ALS!
@US_FDA
thank you for living up to your promise of regulatory flexibility for ALS. ALS community: YOU made this happen with your relentless advocacy. Remember that. Stay tuned for updates on access to this treatment!
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"If you ask 10,000 ALS patients if they would take a drug that is safe and may slow their progression by up to 25% and extend their life by as much as 6.5 months, I guarantee you 10,000 out of 10,000 will say yes." -
@sabrevaya
and
@bsw5020
#AMXAdCom
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Happy Birthday,
@bsw5020
!
Thank you for leading a revolution to cure the incurable. Here's to 40 more incredible years.
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People living with ALS deserve access to safe and effective treatments. ASAP. We are calling on
@BrainStormCell
and
@US_FDA
to work together to urgently move NurOwn, a promising treatment, through the regulatory process. Join us and sign this petition:
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I AM ALS was so privileged to be a part of an intimate screening of No Ordinary Campaign (
@noc_film
) at the White House last night with co-founders
@bsw5020
and
@sabrevaya
and First Lady
@DrBiden
! (1/2)
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When he was diagnosed, they said today wouldn't happen.
Today, Brian turns 39 - and he's in the fight of his life.
Join us in wishing him a happy birthday - and here's to many, many more and a world without ALS.
Here's to
@bsw5020
.
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Today, we have hope. ACT for ALS just passed in the House. One chamber of Congress down, one to go! Thank you to the bill’s cosponsors
@RepMikeQuigley
and
@JeffFortenberry
. The ALS community is forever grateful.
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A huge thank you to
@katefagan3
,
@tomhaberstroh
,
@LeBatardShow
and the 2,501 people who raised over $125,000 to fuel the ALS movement. You all are incredible.
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Happy birthday to our co-founder,
@bsw5020
, who turns 41 today. Here's to ending ALS and many, many more years of inspiring a community of revolutionaries.
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A HUGE thank you goes out to our amazing advocates who helped us place flags in DC today.
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Today, we lost a giant in this community.
@PeteFrates3
was a husband, father, brother, son.
He leaves behind a family but also a legacy-bringing the entire nation into our fight to end ALS.
Our thoughts & sympathy to all who love Pete-we fight on for him & so many others.
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I AM ALS is appalled by Cigna’s decision to not cover an FDA approved treatment for ALS that extends functionality & life.
@Cigna
needs to immediately reverse this decision. People living with ALS deserve better and don't have time to wait while battling an always fatal disease.
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@BarackObama
once said, "I'm asking you to believe. Not in my ability to create change - but in yours."
That belief, that we are all part of building a better world, is what we strive to live out every day. Thank you, Mr. President, for inspiring us to dream.
A story worth sharing: Twelve years ago, Brian joined my first presidential campaign. Two years ago, he was diagnosed with ALS and launched
@iamalsorg
to find a cure. Brian and Sandra wake up every day believing that we can win this fight—and that makes me hopeful, too.
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After lots of people dumped ice on their heads did you ever find yourself wondering, what the heck is ALS?
We did. And so did most Americans.
So we set out to answer this question in less than 60 seconds.
Watch. Share. Help kick some
#ALS
.
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"He's gonna find that cure."
You've got that right
@JesseBWatters
.
Thank you
@TheFive
for spotlighting
#IAMALS
and our Kilt Walk for a Cure!
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All your calls, emails and letters worked and helped pass a bill waiving the 5-month waiting period for ALS patients to access SSDI benefits.
Now it's time to celebrate. Join us, congressional champions,
@bsw5020
,
@SteveGleason
and
@AdyBarkan
tomorrow!
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ACT FOR ALS BREAKING NEWS: The date is set! Next Thursday, Nov. 4 the House Energy and Commerce Health Subcommittee will begin reviewing ACT for ALS. This is the first of many steps to pass this into law. More below.
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The ALS community deserves transparency, so we need your help contacting your legislators to request a congressional hearing be held with the FDA to discuss ALS and ALS therapy development. Join us by taking action!
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“Please do not let another generation of ALS patients die in the pursuit of the perfect. Please let this be the first generation to survive. We want to live. You have the power to make that possible.” -
@sabrevaya
&
@bsw5020
#FDAHearings
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We will change the world. We will
#EndALS
and unlock
#CuresForAll
.
We will do it together.
For the incredible friends and family we still carry with us in this fight and for every person battling a neurodegenerative disease today.
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Today, because of your tireless efforts we now have 290 Representatives co-sponsoring a bill that will reduce the 5 month waiting period for ALS patients accessing disability benefits.
Now, it's time to work with Congress to get this thing passed.
Let me put this in perspective: 279 Representatives, of both parties, are sponsoring this bill and will vote for it. We need 290 to have a shot at making this bill into law.
Make your voices heard. Make this bill law. Help so many. You have the power to make a difference.
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This is not a movie. It’s a movement. Driven by those most impacted by
#ALS
, who set out to change a system that was not working for them.
Every. Single. Day. They Lead.
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Hi Everyone! I’m Deb. I’m so proud to be the scribe for the I AM ALS Legislative Affairs Team! I lost my wonderful husband Tim to ALS 7 years ago. I stay in this movement because I don't want other families to go through what my family did.
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I AM ALS friend Dan handed off the NurOwn petition -- and all 802 pages of signatures -- to Dr. Peter Marks at the FDA today. To everyone who signed and shared: THANK YOU.
#NoAdCommNoVoice
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The community SHOWED UP for
#LouGehrigDay
and among many incredible things helped raise $250,000 that will be matched!
Thank you
@katefagan3
,
@tomhaberstroh
,
@ScottFightsALS
,
@ChuckHabz
,
@BoogSciambi
,
@pdavison
and so many others including 2,800+ new supporters of this movement!
In honor of
#LouGehrigDay
, a group of incredible people came together to match every dollar donated up to $250,000.
You all have helped raise more than $100,000 in the last 3 days! Thank you!!
Let's keep this momentum going. Click this link to donate:
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Today, the House and Senate announced bills that will create real pathways to provide faster and broader access to therapies for
#ALS
.
This movement is working and our congressional leaders are listening, all because of you.
📖👇
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It's official! The ALS Disability Insurance Access Act was signed into law today! 🎉
Never question if your advocacy is making a difference. It drives us closer to ensuring dignity for the ALS community every single day.
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1 in 6. The number of ALS patients who are veterans.
The 5 incredible veterans in this video represent an entire community that fought for our country and now fight for their lives.
Now it’s up to us to stand and fight for them. We are all in.
How about you?
#VetsFightALS
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As your team said, Eric and Amanda, you are not alone.
There is an entire community here fighting alongside you ready to
#AxeALS
.
Thank you for having the strength to tell your story,
@Stevens_nation
.
@TheEllenShow
, thank you for now being a part of this community.
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HUGE NEWS!
#ACTforALS
will be voted on in the House of Representatives next week!
Thanks to every single advocate who has worked tirelessly to make this possible.
BREAKING: the full House Energy and Commerce Committee has approved ACT for ALS! Now the bill goes to House leadership to decide on a floor vote. One step closer!
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Thanks for the *exposure* and helping put the *focus* on this fight, Pete!
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I AM ALS is appalled by
@Cigna
’s decision to not cover an FDA approved treatment for ALS that extends functionality & life. Cigna needs to immediately reverse this decision! People living with ALS deserve better and don't have time to wait while battling an always fatal disease.
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Never question if you are making a difference. After tens of thousands of you relentlessly took action to change history,
#ACTforALS
was signed into law.
Thank you,
@POTUS
for giving tangible hope to every person impacted by ALS today.
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We are so grateful to have
@janemarielynch
supporting our fight for
#CuresForAll
.
Together, we will change the world.
Join us 12.17.19 as we take our fight to Times Square.
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“ALS patients are willing to accept risk, because we know what’s behind Door Number 2.” - Brian Wallach
@bsw5020
#PPA
#PromisingPathwayAct
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"Today science is finally producing therapies that may be able to slow or stop this disease. This reality must be matched by a new regulatory approach that speeds promising therapies to ALS patients." -
@bsw5020
📽️
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@sandymorris333
asked that we honor her life by sharing this video of her and her family. Sandy’s husband and children are just as incredible, powerful, and thoughtful as she. They are in our hearts. Thank you, Sandy. We will take that baton and get us to the winner’s circle.
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And just like that, the flag display is complete! If you submitted a name for a flag, keep an eye on your email in the next couple of days for a link to the photo album containing all of the flags. Thank you for allowing us to honor you & your loved ones.
#ALSinDC
#alsfreeworld
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ALS can't stop you from accomplishing your dreams. Sally, diagnosed in 2019 in her early 30s, recently opened her own business, Denver Wine Merchant, with her partner. Following her passion has given her strength. Read her story.
#InHerALSShoes
#IAMALS
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.
@Cigna
, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don’t have time to wait. Reverse your decision now.
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Never question if your voice matters.
More than 15,000 members of this community were heard today as we met with
@SteveFDA
and handed him this letter:
Thank you for the difference you are making in this fight.
Thank you for helping us change the world.
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"I believe we can deliver on the hope felt by the ALS community to make real the day we can look at a pALS and say 'she had ALS.'"
Meet our new CEO, Danielle.
We're so excited she's here.
Read more about her and why she chose to join I AM ALS:
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"When you are a patient and you are driving the advocacy agenda and you're running out of time you push hard and you do work differently." -
@sabrevaya
Thank you
@LeeCowanCBS
and
@CBSNews
for joining this movement and helping put an end to ALS.
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Just a few friends fighting to build a movement that will change the world.
For each person and family battling
#ALS
.
@SteveGleason
@dantate2
@bsw5020
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ALS. MS. Parkinson's. Alzheimer's. Huntington's. Frontotemporal Dementia.
They are all linked. They all have no cure.
We can change that. We will change that.
Cure one. Cure all.
#CuresForAll
We are the ones we’ve been waiting for.
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"Eighty-two years after Lou’s speech, patients are going home and doing the same things Lou did ... We are not much further along than Lou was. That is why this day [
#LouGehrigDay
] is so important."
@gwenpetersen7
, together we will put an end to ALS.
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Today, more than 99% of ALS patients will die without the chance to access a promising therapy. It’s been this way for years.
Join us in letting Congress know it’s time to fix this broken system.
Sign the petition to pass
#ACTforALS
(H.R.7071) now.
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BREAKING: the full House Energy and Commerce Committee has approved ACT for ALS! Now the bill goes to House leadership to decide on a floor vote. One step closer!
HR 3537, the Accelerating Access to Critical Therapies for ALS Act, introduced by
@RepMikeQuigley
and 99 cosponsors, awards grants to cover the cost of investigational drugs for the prevention, diagnosis, mitigation, treatment or cure of ALS.
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Enough of the red tape. Enough of the waiting. Enough of the silence. We demand answers. Treatments for
#ALS
work for some. When can patients who are dying have access?
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One week from today, 6,000 blue flags will be displayed in front of the Washington Monument, representing the 6,000 people who are diagnosed with ALS each year. (1/2)
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We are on a journey to deliver on hope. That hope came today in the form of the Senate AGAIN doubling funding for the Dept of Defense ALS Research Program to $40M for 2021. This monumental leap was brought to you directly by champions
@SenatorDurbin
@lisamurkowski
@SenShelby
.
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“This is our closing argument for our lives.”
Watch
@bsw5020
and
@sabrevaya
's powerful testimony in front of Congress today.
📽️
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BREAKING: The House just passed the Elizabeth Dole Home Care Act, 414 - 5! 🎉 Thank you to all 414 Representatives who supported this important legislation!
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"That is how we transform a disease from fatal to chronic. We extend survival drug by drug, bit by bit. Similar drugs are being approved for cancer." -
@sabrevaya
and
@bsw5020
#AMXAdCom
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Today’s the day!! We are out on the National Mall setting up the
#ALSinDC
flag display. A huge thank you to the volunteers who came to help.
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The Senate Appropriations Committee voted to double DoD funding for ALS research from $10 to $20 million.
This is huge.
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To Chris Snow’s family, friends and colleagues — we are incredibly sorry for your loss. From the bottom of our hearts, thank you for your continued support of our shared mission to end
#ALS
once and for all.
The Capitals join the
@NHLFlames
and entire hockey community in mourning the loss of Assistant GM Chris Snow after a courageous battle with ALS.
Our organization extends its deepest condolences to the Snow family and friends during this incredibly difficult time.
#SnowyStrong
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You asked for transparency and Congress listened. Thank you Congressman
@FrankPallone
for hosting a congressional hearing in July with the
@US_FDA
on making progress on ALS treatments and other neurological diseases.
The ALS community deserves transparency, so we need your help contacting your legislators to request a congressional hearing be held with the FDA to discuss ALS and ALS therapy development. Join us by taking action!
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Go get ‘em, Juan!!!!
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In
@sandymorris333
's memory, she asked us to do a day of actions. And if Sandy asks you to do something, you do it! Look out for Sandy Actions!
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15 pALS and cALS wrote a letter to the FDA to hold them accountable for the long overdue ALS guidance document.
When we hand deliver this letter we want your name on it. This is all of our fight. Make your voice heard.
Read the letter and sign it here:
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Some will say there is no hope for people living with ALS.
F that. They don’t see what we see -- amazing communities fighting like hell to make hope real.
And we won't stop until we find cures.
#WhyIFight
Retweet this post, use
#WhyIFight
, and tell us why you keep fighting.
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This is
@nadia_sethi
. Her husband is living with ALS. She wanted a way to see in one place the clinical research being done around the world.
She couldn’t find one, so she created it - .
Every. Single. Day. They Lead.
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It has been more than 80 years since Lou Gehrig was diagnosed with ALS. And yet, there are still no cures. You have the power to change that.
Share this video and let's finish what Lou started and end ALS.
#LouGehrigDay
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The ALS community came together alongside
@SenWhitehouse
,
@SenTomCotton
,
@SenatorBraun
and
@ChrisCoons
to correct an injustice and urge
@SocialSecurity
to allow access to disability benefits for those with ALS in the waiting period now.
Read both letters:
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The revolution strikes again! The
@DeptofDefense
budget will AGAIN double funding for ALS research, from $20M to $40M for FY2021.
In the last two years, federal spending on ALS research has gone up $75M. Take. That. IN! This is the ALS community. Relentless and loving it!
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Hi, I'm Juan Reyes, AKA The Juan and Only,and I am living with ALS. A husband and father of 4 residing in San Antonio Texas. Join me and I Am ALS to help us create A World Without ALS.
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Our co-founders, Brian Wallach and Sandra Abrevaya, made a triumphant return to CBS Sunday Morning last month. Your story has power. Help us tell more stories of hope and inspiration in 2024 by making a gift to I AM ALS:
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"Through a decade and a half, Brian and I have experienced so much together. We have really been there emotionally and physically for each other, always taking care of each other."
#ALoveStoryALS
📖
@sabrevaya
and
@bsw5020
's love story:
📸 : Julie Dietz
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In response to the results of the
#AMX0035
phase 2 trial published today, I AM ALS and
@alsassociation
launched a petition urging
@AmylyxPharma
and
@US_FDA
to get the drug to market as soon as possible.
Sign today:
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I AM ALS was a subject of an online attack over the weekend - a public, antagonistic display that was not preceded by any private discussion. We stand with our community and do not tolerate mean-spirited rumors. We DO, however, welcome questions, concerns, and ideas.
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In addition, I AM ALS will now be able to invest in a strategy to support caregivers and caregiving - a deep and consistent challenge. To the ALS champions and advocates who have supported us: thank you. This gift, as CEO Andrea Goodman put it, is “a game-changer.” (3/3)
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Hi! I’m Christa. I co-lead I AM ALS’ Legislative Affairs Team with the fierce
@nicolecimbura
. My beloved husband is living with ALS and I am his caretaker. I joined the legislative team to speed up access to treatments for him and for everyone living with ALS.
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"I feel that this honor represents some joy, encouragement and even triumph for the tens of thousands of extraordinary families currently enduring life with ALS." -
@SteveGleason
Thank you for your leadership and unwavering strength, Steve. And for fighting for all of us.
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My name is Shelly. I am a veteran living with ALS and am on I AM ALS’ Veterans and Legislative Affairs Teams. I joined I AM ALS teams to make a difference now.
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Nine years ago
@SteveGleason
was given only a few years to live.
Then...
He decided to change the world. For himself and the many, many battling ALS. Now because of him and you, we have more hope than ever.
Who will you change the world for?
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