Just diagnosed with ALS? We got you. Here are the first few things you want to do, from people who've been right where you are.

Louisiana—we're SO CLOSE to reauthorizing ACT for ALS. Contact your Congressmembers to help us get there TODAY @ bit.ly/fundALS. Not in Louisiana? Share this post with a friend who lives there!

No context—just Deb Winter and Samson the Wonder Dog wishing you a Happy Thursday! Isn't he the cutest? #dogsofals 🐶

Our support groups are more than a place to get support of all kinds while navigating ALS. They are a space to build a community of deep, often lifelong friendships. Join a group TODAY @ bit.ly/ALSgroups

The Veterans Accessibility Advisory Committee Act could make navigating the VA easier for hundreds of families living with ALS. Call your Senators to help pass it TODAY @ bit.ly/VAcommittee

Our FIRST book club discussion is TOMORROW—Jan 15 @ 6pm ET. Don't miss it! RSVP TODAY @ bit.ly/ALSbooks

Thank you for your time @degette.house.gov! We recently met to discuss the urgency of reauthorizing ACT for ALS before it expires in September. Our legislative partners made ACT for ALS possible back in 2021, and we're grateful to have them in our corner again. Join our push TODAY @ bit.ly/fundALS

Community—we've taken a WHOPPING 317,412 actions so far! Needless to say, YOU made this possible and we're grateful. But we're not done yet. With ACT for ALS expiring this year, this work is even more urgent. TAKE ACTION and help us make history in 2026 → bit.ly/ALSaction

However you are impacted by ALS, YOU are the backbone of this community. We'd LOVE to hear your story and how you found us! Head over to bit.ly/careALS TODAY!

Thank you, Congressman Gus Bilirakis, for meeting with us to discuss ACT for ALS! Reauthorization is our top priority, as ACT for ALS is set to expire later this year. Help keep critical federal ALS research fully funded @ bit.ly/fundALS

EAPs offer so much more than treatment. They also mean hope, optimism, and the mental fortitude to face one of the most brutal illnesses we know. Help push for ACT for ALS reauthorization to keep EAPs funded → bit.ly/fundALS

Volunteers—thank you for making these POWERFUL moments happen! We look forward to doing even more with you in 2026!

What's your favorite movie about ALS? Drop a "1", "2", "3", or "4" in the comments below 👇

Have you heard? We JUST launched The I AM ALS Book Club! We're reading "Unfixed" by Kimberly Warner for our first discussion at 6pm on Jan 15! SIGN UP @ bit.ly/ALSbooks

Later this year, ACT for ALS is set to expire and with it YEARS of REAL momentum—funding, research, and promising treatments. That's why getting it reauthorized is SO important. Push with us TODAY @ bit.ly/fundALS

I AM ALS' Community Outreach Team is kicking off 2026 by carrying forward Tim Lowrey's vision of education current and future healthcare professionals about ALS. Help us honor and extend Tim's legacy by requesting a panel for YOUR network, organization, or classroom: https://bit.ly/47QIo1x

You may have heard us talk about ALL ALS last month. ALL ALS is a long overdue federally funded study on the effects and history of ALS. Funded by ACT for ALS, it sends a clear message to the ALS community—you matter.

Prioritize YOUR mental health this new year. Our one-of-a-kind peer support program pairs people impacted by ALS to share information, provide support, and more. Link up with a Peer Support Specialist TODAY @ bit.ly/ALSpeers

We're so grateful to @murray.senate.gov for her continued support as we seek to urgently reauthorize ACT for ALS and keep it fully funded! Push for reauthorization with us TODAY @ bit.ly/fundALS

Happy Birthday, @katiecouric.bsky.social! If you've seen “For Love & Life: No Ordinary Campaign,” you already know that Katie is an insanely talented producer. She is also an amazing friend, sharp dresser, and a staunch ally in the movement to end ALS. Send Katie some birthday love in the comments!👇

Thanks to YOU pushing with us, we've brought more attention, funding, and promising therapies to the ALS community! This progress would not be possible without your advocacy, so thank you!

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!

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

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

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

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

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.

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 👇

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

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.

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!

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!

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!

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!

Jennifer is one of hundreds of participants in ACT for ALS-funded EAPs. Promising stories like this are why ACT for ALS is so important—if ACT for ALS isn't reauthorized, ALL of these people lose access to EAP treatments. PUSH for access and hope TODAY @ bit.ly/fundALS

Kris MacNamara is a PROUD grandmother, mother, sister, Bowie fan, tattoo lover, and dog mom! ALS is just one part of her story. Who are YOU outside of ALS? Drop a note in the comments 👇

Matt Rocheleau is a Pulitzer Prize-winning journalist living with ALS! He's also an active member of the I AM ALS community. He's a stellar human being who truly has a way with words. Read the POWERFUL full blog at bit.ly/LuckyMatt

Jodi founded Hope Loves Company to make sure no child has to navigate the scary world of ALS alone. Since then, her skilled leadership has brought programming, resources, and support to dozens of families. Congrats on winning The Brian Wallach and Sandra Abrevaya Trailblazer Award, Jodi!