I AM ALS (@iamalsorg) header
I AM ALS (@iamalsorg) profile picture

I AM ALS

@iamalsorg

I AM ALS is the largest community movement made up of the very people living with, impacted by, and highly motivated to end ALS.

iamals.org/
Joined November 2018
  • Tweets7.7K
  • Following718
  • Followers27K
We're launching our Push for Progress campaign to accelerate ALS research, expand treatment access, & secure $1BN in federal funding over 3 years. ALS is at a tipping point CLOSE to new treatments, but thousands will lose access unless we TAKE ACTION @ iamals.org/progress
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Veterans are more than 2x as likely to be diagnosed with ALS. We don’t know why, and Veterans deserve answers. Support Operation: END ALS, created by our Veterans Team co-chair Juan Reyes: bit.ly/OpEndALS (case-sensitive)
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Losing a spouse to ALS shouldn’t mean losing financial support because the disease moved too fast. 📣 Tell Congress to pass the Justice for ALS Veterans Act provisions: bit.ly/ALSvets (case-sensitive) #EndALS #VeteransDay
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Veterans with disabilities, including those living with ALS, deserve VA services they can actually access. 📣 Ask Congress to pass the Veterans Accessibility Advisory Committee Act: bit.ly/VAcommittee (case-sensitive) #EndALS #VeteransDay
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Our Tim Lowrey ALS Panel Series hosted its 150th panel this year! 🎉 Bring a virtual panel to your group, class, or organization to learn about ALS from people living with it. Booking into 2027: bit.ly/ALSPanel (case-sensitive)
An individual stands smiling beside a Tim Lowrey ALS project poster. The poster contains text about ALS research and includes sections labeled Background, Methods, Results/Findings, and Conclusions. The person is wearing a dark blazer and light pants, with a patterned carpet visible in the background.

ALT An individual stands smiling beside a Tim Lowrey ALS project poster. The poster contains text about ALS research and includes sections labeled Background, Methods, Results/Findings, and Conclusions. The person is wearing a dark blazer and light pants, with a patterned carpet visible in the background.

A person seated in a wheelchair is smiling and holding a silhouette of The Incredible Hulk. They are wearing a floral patterned shirt and several colorful wristbands. Other people are visible in the background at what appears to be an indoor event.

ALT A person seated in a wheelchair is smiling and holding a silhouette of The Incredible Hulk. They are wearing a floral patterned shirt and several colorful wristbands. Other people are visible in the background at what appears to be an indoor event.

At a conference, a person is speaking at a podium on a stage in front of an audience. A large screen displays information about the "Tim Lowrey ALS Panel Series" and includes text about ALS education. The room is filled with attendees listening to the presentation.

ALT At a conference, a person is speaking at a podium on a stage in front of an audience. A large screen displays information about the "Tim Lowrey ALS Panel Series" and includes text about ALS education. The room is filled with attendees listening to the presentation.

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Thank you, Nicole Cimbura, former co-chair of the I AM ALS Legislative Affairs Team! 💙 She helped pass the original ACT for ALS and created the “lightning in the bottle” behind historic federal ALS research funding. This year’s reauthorization work was built on her foundation.
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Veterans: our Veteran I AM ALS Peer Mentors are here to help you navigate ALS, with emotional support, resources, and practical guidance. Sign up to get matched: bit.ly/ALSpeers (case-sensitive) #NationalFamilyCaregiversMonth
Image from I AM ALS (@iamalsorg)
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ACT for ALS is law! But our work isn’t done. It allocates $100M a year for 5 years ($500M total) toward federal ALS research, but that funding isn’t guaranteed. Tell your lawmakers to fully fund the ACT for ALS: bit.ly/ALSFY-27 (case-sensitive)
Informative graphic featuring a call to action for ALS funding. Title reads "We Need You!" followed by a message about the ACT for ALS needing Congress's vote for full funding. It urges prioritizing ALS funding in December and includes a link: bit.ly/ALSFY-27. The "I AM ALS" logo is at the bottom right.

ALT Informative graphic featuring a call to action for ALS funding. Title reads "We Need You!" followed by a message about the ACT for ALS needing Congress's vote for full funding. It urges prioritizing ALS funding in December and includes a link: bit.ly/ALSFY-27. The "I AM ALS" logo is at the bottom right.

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Calling Veterans living with ALS! Join our constituent list so we can include your voice when we ask legislators to boost research funding and speed up treatments and cures. Sign up: bit.ly/ALSconstituents (case-sensitive)
A graphic with a blue background titled "Calling ALS Veterans! Become a constituent today" with "I AM ALS" logo. Below are three numbered circles: 1. A phone displaying a privacy message. 2. Two people discussing at a table. 3. The U.S. Capitol Building. Text mentions privacy, outreach, and action. A sign-up link "bit.ly/ALSconstituents" is at the bottom.

ALT A graphic with a blue background titled "Calling ALS Veterans! Become a constituent today" with "I AM ALS" logo. Below are three numbered circles: 1. A phone displaying a privacy message. 2. Two people discussing at a table. 3. The U.S. Capitol Building. Text mentions privacy, outreach, and action. A sign-up link "bit.ly/ALSconstituents" is at the bottom.

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Thank you to Raphael! Scheduling meetings, leading outreach, and raising funds to get ACT for ALS across the finish line—his impact cannot be overstated. He leads with kindness and encouragement. —Celina, I AM ALS Federal Agency Community Team (FACT)
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Join us for Talk About It: A Mental Health Series! The Many Shades of ALS Team hosts a session on respiratory changes in ALS and what they can mean emotionally, with Philio Alapat, MD and Paulo Manguramas, RCP. 📅 Nov 19, 6pm ET / 3pm PT bit.ly/livefullyALS (case-sensitive)
“Many Shades of ALS mental health event poster. Title: 'Let's talk about it.' Hosted by I AM ALS. Event date: November 19 at 6 PM ET. RSVP link provided. Featuring Paulo Manguramas, Respiratory Care Practitioner at Loma Linda University Medical Center, and Philo Alapat, Associate Professor and Pulmonologist at Baylor College of Medicine. Background includes images of two individuals.”

ALT “Many Shades of ALS mental health event poster. Title: 'Let's talk about it.' Hosted by I AM ALS. Event date: November 19 at 6 PM ET. RSVP link provided. Featuring Paulo Manguramas, Respiratory Care Practitioner at Loma Linda University Medical Center, and Philo Alapat, Associate Professor and Pulmonologist at Baylor College of Medicine. Background includes images of two individuals.”

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THANK YOU, ALS advocates! Constituents make us more powerful! We gained new consented constituents in CA-46, CA-51, CO-08, FL-02, FL-03, ME-02, TX-15, and VA-09. 🏛 Not a constituent yet? Join us: bit.ly/ALSconstituents (case-sensitive)
A graphic with the text "Our movement is growing" at the top. Below it, a list of locations: CA-46, CA-51, CO-08, FL-02, FL-03, ME-02, TX-15, VA-09, highlighting new advocates. At the bottom, it reads "Every one of you helps us get closer to ending ALS." The I AM ALS logo is at the bottom right. An illustration of the U.S. Capitol is in the left corner.

ALT A graphic with the text "Our movement is growing" at the top. Below it, a list of locations: CA-46, CA-51, CO-08, FL-02, FL-03, ME-02, TX-15, VA-09, highlighting new advocates. At the bottom, it reads "Every one of you helps us get closer to ending ALS." The I AM ALS logo is at the bottom right. An illustration of the U.S. Capitol is in the left corner.

Blue background with text promoting the "I AM ALS" initiative. It reads: "More stories. More power. Ready to add yours? Join us: bit.ly/ALSconstituents (case-sensitive)." The bottom left features a stylized image of the U.S. Capitol building.

ALT Blue background with text promoting the "I AM ALS" initiative. It reads: "More stories. More power. Ready to add yours? Join us: bit.ly/ALSconstituents (case-sensitive)." The bottom left features a stylized image of the U.S. Capitol building.

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Thank you to the I AM ALS Legislative Affairs Team for passing the ACT for ALS in tough times. Hundreds of people living with ALS will now get treatments they otherwise never would have. Jack, Troy, Garrett, and Teri, you're the engine of this community. —Dan Tate, Jr.
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I AM ALS is a community of patients, caregivers, researchers, and advocates working to end ALS. Since 2019, we've advocated for record ALS research funding and helped make scientific breakthroughs possible. Hear our co-founders share the story. Thank you, Whitney Reynolds Show!
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The first-ever Cures Collective Neurodegenerative Research Innovation Think Tank kicks off in DC today! Members across the neurodegenerative disease community are meeting to discuss how to change the way we research ALL neurodegenerative diseases. Watch this space for more! 👀
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We won an Anthem Award! 🏆 Thanks to your votes and relentless advocacy, our Push for Progress campaign took home Silver in Policy & Advocacy, Health, out of 2,500 entries from 43 countries! 💙 This win is yours, and it'll help us reach more people. Thank you for helping end ALS!
Image from I AM ALS (@iamalsorg)
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Loving people like us through ALS from the outside can be confusing. So Amy Mitchell, an ALS caregiver, invites you inside to hear what her friends want you to know. Full story: bit.ly/Amy-NCM (case-sensitive)
Image from I AM ALS (@iamalsorg)
Image from I AM ALS (@iamalsorg)
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The Credit for Caring Act gained 53 new cosponsors! 🎉 It would give eligible family caregivers up to a $5,000 tax credit. Caregivers spend $11,508 a year on average (AARP). Ask your lawmakers to cosponsor: bit.ly/credit4care (case-sensitive) #CreditForCaring
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Throwback moment with the amazing Jenny! Jenny found I AM ALS through Alex Toussaint's Give Back Run Club Tour stop in Chicago last September. With no personal connection, she felt drawn to this movement and has been an advocate ever since. The cause: ending ALS.
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IT HAPPENED! ACT for ALS has been signed into law! 🎉 We rang every bell and knocked on every door, and it was reauthorized with just 24 hours to spare. Access to promising treatments, $500M in research, and a faster path to a cure. Thank you for making history with us!
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Caregivers Month is here. 💜 No one should have to do it alone. Join our virtual event tomorrow to connect with people who get it and find community. Getting Started | Nov 4 at 8PM ET bit.ly/NCM-1 (case-sensitive) Know an ALS caregiver? Pass this along.
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