@iamals.bsky.social
I AM ALS is the largest community movement made up of the very people living with, impacted by, and highly motivated to end ALS. We’re fueled by urgency to find a cure and a track record of real impact.
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iamals.bsky.social
@iamals.bsky.social
· Sep 15
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
Grab some merch and help end ALS! Head over to bit.ly/merch4ALS TODAY!
January 8, 2026 at 2:06 PM
Grab some merch and help end ALS! Head over to bit.ly/merch4ALS TODAY!
HUGE thank you to Alex Karabatsos, Legislative Director to @trahan.house.gov, for joining us for this VERY important discussion around reauthorizing ACT for ALS today! Time's running out—ACT for ALS expires in JUST a few months. Thank you for showing up with urgency and compassion!
January 7, 2026 at 8:49 PM
HUGE thank you to Alex Karabatsos, Legislative Director to @trahan.house.gov, for joining us for this VERY important discussion around reauthorizing ACT for ALS today! Time's running out—ACT for ALS expires in JUST a few months. Thank you for showing up with urgency and compassion!
Caregivers carry WAY too much, all alone. The Credit for Caring Act would provide some financial support to lighten the load and help them balance their duties with work. Call your Senators TODAY to help pass it at bit.ly/credit4care
January 7, 2026 at 3:55 PM
Caregivers carry WAY too much, all alone. The Credit for Caring Act would provide some financial support to lighten the load and help them balance their duties with work. Call your Senators TODAY to help pass it at bit.ly/credit4care
Learn all about clinical trials from ALS Signal, our database BY people living with ALS FOR people living with ALS! Check it out TODAY @ bit.ly/ALSSignal
January 7, 2026 at 2:46 PM
Learn all about clinical trials from ALS Signal, our database BY people living with ALS FOR people living with ALS! Check it out TODAY @ bit.ly/ALSSignal
Can you imagine hand-writing 706 thank-you cards in JUST one year? One of our volunteers did just that. Our work here at I AM ALS would not be possible without the dedication and drive of volunteers and supporters like Marlo, and we couldn't be more grateful! Drop a "thank you, Marlo!" down below! 👇
January 6, 2026 at 10:13 PM
Can you imagine hand-writing 706 thank-you cards in JUST one year? One of our volunteers did just that. Our work here at I AM ALS would not be possible without the dedication and drive of volunteers and supporters like Marlo, and we couldn't be more grateful! Drop a "thank you, Marlo!" down below! 👇
ANNOUNCING... THE I AM ALS BOOK CLUB! Come join us once a month for fun and connection in a digital space that balances depth with joy. SIGN UP @ bit.ly/ALSbooks
January 6, 2026 at 8:10 PM
ANNOUNCING... THE I AM ALS BOOK CLUB! Come join us once a month for fun and connection in a digital space that balances depth with joy. SIGN UP @ bit.ly/ALSbooks
For Chuck, EAPs meant hope, quality of life, and family dinners until the day he passed from ALS. Expanded Access Programs can preserve families' most precious yet rare resource—time. Help keep EAPs in place by reauthorizing ACT for ALS before it expires next year @ bit.ly/fundALS
January 5, 2026 at 3:55 PM
For Chuck, EAPs meant hope, quality of life, and family dinners until the day he passed from ALS. Expanded Access Programs can preserve families' most precious yet rare resource—time. Help keep EAPs in place by reauthorizing ACT for ALS before it expires next year @ bit.ly/fundALS
One of the hardest things about ALS is the isolation. But don't worry—you don't have to do it alone. Our Peer Support Specialists are ready to provide personalized services to help you through your ALS journey. SIGN up for one-on-one support TODAY → bit.ly/ALSpeers
January 4, 2026 at 4:13 PM
One of the hardest things about ALS is the isolation. But don't worry—you don't have to do it alone. Our Peer Support Specialists are ready to provide personalized services to help you through your ALS journey. SIGN up for one-on-one support TODAY → bit.ly/ALSpeers
ACT for ALS is a landmark piece of legislation that took years to introduce, pass, and implement. Since its passing, the ALS community has seen HISTORIC progress towards a cure. But that work is at risk if it isn't reauthorized before next September. Help keep ACT for ALS in place at bit.ly/fundALS
January 3, 2026 at 7:51 PM
ACT for ALS is a landmark piece of legislation that took years to introduce, pass, and implement. Since its passing, the ALS community has seen HISTORIC progress towards a cure. But that work is at risk if it isn't reauthorized before next September. Help keep ACT for ALS in place at bit.ly/fundALS
As we remember Tim Lowrey, we celebrate the impact of his namesake: the Tim Lowrey Panel Series. Last year, more than 2,200 people participated in 70 panels across the US! Thanks to I AM ALS' Community Outreach Team for leading this effort. Request a panel: https://bit.ly/47QIo1x
January 2, 2026 at 9:11 PM
As we remember Tim Lowrey, we celebrate the impact of his namesake: the Tim Lowrey Panel Series. Last year, more than 2,200 people participated in 70 panels across the US! Thanks to I AM ALS' Community Outreach Team for leading this effort. Request a panel: https://bit.ly/47QIo1x
We are deeply saddened to share the passing of Tim Lowrey. Tim was a dedicated, hard-working contributor to the I AM ALS community. He helped spearhead one of our most successful and impactful programs, the Tim Lowrey ALS Panel Series.
Tim, rest in power. You'll be missed.
Tim, rest in power. You'll be missed.
January 2, 2026 at 4:49 PM
We are deeply saddened to share the passing of Tim Lowrey. Tim was a dedicated, hard-working contributor to the I AM ALS community. He helped spearhead one of our most successful and impactful programs, the Tim Lowrey ALS Panel Series.
Tim, rest in power. You'll be missed.
Tim, rest in power. You'll be missed.
Looking for a fun way to build community and make an impact this New Year? VOLUNTEER for a Community Team @ bit.ly/vol4ALS
January 2, 2026 at 2:06 PM
Looking for a fun way to build community and make an impact this New Year? VOLUNTEER for a Community Team @ bit.ly/vol4ALS
Happy New Year, Community! We only have one resolution—to keep pushing with you until we all live in a world without ALS. What are your New Year's resolutions? Drop them in the comments 👇
January 1, 2026 at 1:55 PM
Happy New Year, Community! We only have one resolution—to keep pushing with you until we all live in a world without ALS. What are your New Year's resolutions? Drop them in the comments 👇
Navigating paperwork, benefits, and the VA can be challenging for for anyone, but especially for Veterans living with ALS. That's why we put together a benefits guide to make the process a little easier. VIEW or SHARE @ bit.ly/vetsALS
December 31, 2025 at 4:08 PM
Navigating paperwork, benefits, and the VA can be challenging for for anyone, but especially for Veterans living with ALS. That's why we put together a benefits guide to make the process a little easier. VIEW or SHARE @ bit.ly/vetsALS
Maya Carter writes to anchor herself through the toughest times. And if you remember her caregiver story from last month, you know her writing is POWERFUL! She's "Most Likely to Write a Bestseller," hands-down. Check out her book, "The Sweet Between: A Soft Reset" AT bit.ly/asoftreset
December 30, 2025 at 3:48 PM
Maya Carter writes to anchor herself through the toughest times. And if you remember her caregiver story from last month, you know her writing is POWERFUL! She's "Most Likely to Write a Bestseller," hands-down. Check out her book, "The Sweet Between: A Soft Reset" AT bit.ly/asoftreset
Community—we're almost 75% of the way towards hitting our year-end goal! DONATE TODAY @ bit.ly/endALS to close the gap!
December 29, 2025 at 3:45 PM
Community—we're almost 75% of the way towards hitting our year-end goal! DONATE TODAY @ bit.ly/endALS to close the gap!
Patty Manhardt, winner of the 2025 James Plews-Ogan Oustanding Advocate Award, was a powerhouse. She knew how to apply pressure—letters to Congress, protests outside lawmakers’ homes, and storytelling through the media. Patty passed away this year, but her legacy lives on in this movement.
December 28, 2025 at 3:55 PM
Patty Manhardt, winner of the 2025 James Plews-Ogan Oustanding Advocate Award, was a powerhouse. She knew how to apply pressure—letters to Congress, protests outside lawmakers’ homes, and storytelling through the media. Patty passed away this year, but her legacy lives on in this movement.
These are just some of the wins ACT for ALS made possible. But we're at REAL risk of losing this progress if it isn't reauthorized next year. PUSH to keep this progress going before ACT for ALS expires in 2026 → bit.ly/fundALS
December 27, 2025 at 7:49 PM
These are just some of the wins ACT for ALS made possible. But we're at REAL risk of losing this progress if it isn't reauthorized next year. PUSH to keep this progress going before ACT for ALS expires in 2026 → bit.ly/fundALS
In meetings with Congressional staff, gatherings of I AM ALS' Legislative Affairs team, and within the community, Troy Fields' leadership shines through. He has advocated for new treatment pathways and for people living with ALS to have a REAL voice in their care. Thank you for your advocacy, Troy!
December 26, 2025 at 8:59 PM
In meetings with Congressional staff, gatherings of I AM ALS' Legislative Affairs team, and within the community, Troy Fields' leadership shines through. He has advocated for new treatment pathways and for people living with ALS to have a REAL voice in their care. Thank you for your advocacy, Troy!
After multiple treatments and an abruptly terminated clinical trial, Jay Connolly found hope and resilience in the HEALEY Expanded Access Program (EAP). EAPs work, which is why we can't risk losing EAP funding when ACT for ALS expires next year! TAKE ACTION @ bit.ly/fundALS
December 26, 2025 at 2:05 PM
After multiple treatments and an abruptly terminated clinical trial, Jay Connolly found hope and resilience in the HEALEY Expanded Access Program (EAP). EAPs work, which is why we can't risk losing EAP funding when ACT for ALS expires next year! TAKE ACTION @ bit.ly/fundALS
Forgot to buy a Christmas gift for a loved one? Head over to @littlewordsproject in person OR call or email your order on December 26 and 25% of your purchase will benefit I AM ALS!
December 25, 2025 at 3:50 PM
Forgot to buy a Christmas gift for a loved one? Head over to @littlewordsproject in person OR call or email your order on December 26 and 25% of your purchase will benefit I AM ALS!
Merry Christmas! Whether or not you celebrate, we hope today is filled with peace, joy, and connection for you. Love, the I AM ALS Team!
December 25, 2025 at 1:48 PM
Merry Christmas! Whether or not you celebrate, we hope today is filled with peace, joy, and connection for you. Love, the I AM ALS Team!
It's Christmas Eve! If you know a caregiver that could use some support today, try to reach out to them!
December 24, 2025 at 3:51 PM
It's Christmas Eve! If you know a caregiver that could use some support today, try to reach out to them!
Troy Fields is a dedicated ally, community leader, volunteer, and an all-around WONDERFUL human being. He loves his grandkids, Radiohead, and the @usffootball Bulls!
December 23, 2025 at 3:52 PM
Troy Fields is a dedicated ally, community leader, volunteer, and an all-around WONDERFUL human being. He loves his grandkids, Radiohead, and the @usffootball Bulls!
Thomas Grassi and his wife love to travel and still fit in a trip or two when they can. Tag us if you ever start a travel blog, Thomas! Getting to know allies like Thomas is one of our favorite parts of working with our volunteer teams. VISIT bit.ly/ALSvolunteer TODAY to join us!
December 22, 2025 at 5:45 PM
Thomas Grassi and his wife love to travel and still fit in a trip or two when they can. Tag us if you ever start a travel blog, Thomas! Getting to know allies like Thomas is one of our favorite parts of working with our volunteer teams. VISIT bit.ly/ALSvolunteer TODAY to join us!