I AM ALS

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

"This flag is a way to honor my mom. It means we keep saying her name. It means I find my bravery, climb the grief mountain, and hold myself accountable. ⁣ ⁣ Knowing a stranger in D.C. might read my mom's name means she remains ...and we continue to heal." - Stacie Winslow

It was so lovely connecting with our friends from Hope Loves Company at the Gathering last week 💙 Grateful for partners across the ALS community who continue to lead with compassion, urgency, and shared purpose.

Thank you @fox5dc, @NBC10Boston, WCAX, ABC, and CBS for helping share our community’s stories 💙 When stories about ALS are seen and heard, more people impacted by ALS feel less alone — and more allies join this movement.

ET has an exclusive first look at an all-new documentary short, 'Ring Every Bell,' about Eric Dane's life with Amyotrophic lateral sclerosis (ALS), premiering on Monday, May 18. youtube.com/watch?v=lY5Z5-…

Couldn’t make it to D.C. last week? Experience the Gathering from wherever you are — catch the full livestream here: bit.ly/gatheringstream

It’s OFFICIAL 👏 Wisconsin and Texas have declared May ALS Awareness Month — thanks to the incredible work of this community. Help make your state next: bit.ly/StateRes

Looking for a photo of your flag? 💙 Sign up for our newsletter to be the first to get the public link when it’s live: bit.ly/News4ALS

The first Comedy Crew of 2026 kicks off TOMORROW! 🎤 Humor helps us find lightness in the weight of ALS. Join the waitlist for a chance to be part of this or future Comedy Crews: bit.ly/crew26

Happening THIS SATURDAY—show up for the ALS community. 💙 Your ticket supports our collective path toward a cure. 🎟️ gofevo.com/event/Iam3

Last week in D.C., our Veterans Team recognized Health Legislative Assistants with custom @brothagency figurines to thank them for their leadership and advocacy for Veterans living with ALS. 🇺🇸 Grateful to the offices of Reps. @RepJasonCrow, @KenCalvert, & @RepTerriSewell 💙

The 2026 I AM ALS Flag Ceremony sent a powerful message: the ALS community will not be ignored. And Congress is listening. Now we keep the pressure on until we reauthorize ACT for ALS. Ask your legislator to cosponsor: bit.ly/fundALS

Read Linda Buhr’s reflection on ALS and the sea of blue flags I AM ALS plants on the National Mall each May — symbols of lives, loss, and hope. It's on the blog at bit.ly/4dyu55E

Community—thank you for an INCREDIBLE Community Gathering & Awareness Event 💙 We laughed, cried, shared, planted flags in the D.C. rain, watched TWO films, met with Congressmembers, reunited with friends, & made our mark. This work is possible because you show up—thank you.

Happy Community Gathering Day 3! 💙 Today, we continue sharing our ALS stories on the National Mall in front of the SEA of 6,000+ blue flags planted by our incredible volunteers. Joining from home? Share your story: bit.ly/story-26

Thank you to the advocates, allies, & friends who joined us at the premiere of Ring Every Bell & screening of Stitching Strength. Thank you to panelists Dr. Bedlack, Deb Winters, Dan Tate & our late Ambassador Eric Dane for the support. Ring Every Bell will be available soon 👀

Thank you for making history today at the 5th Annual I AM ALS Community Gathering & Awareness Event 💙 6,000+ flags. Hundreds of people impacted by ALS. One movement to end ALS. We honored loved ones, built community, and took a stand. THIS is what community looks like.

The Clene Team joined @iamalsorg on the National Mall, where a sea of blue flags honors lives lost to ALS. We stand with families and support reauthorization of ACT for ALS to advance awareness, research, care, and a cure. 💙 #EndALS #ACTforALS

Grateful to @PamBelluck and @nytimes for telling our community’s story and making ALS progress visible. THIS is progress—I AM ALS pushed for Tofersen, the FDA understood this need, and it paid off. We're keep pushing for therapies for ALL forms of ALS. 🔗: bit.ly/NYT-tofersen

Progress isn’t possible without ALS stories like Wilton’s—and yours. 💙 Thank you for being a part of this community movement. Share your story: bit.ly/story-26

🚨 ACT FOR ALS UPDATE 🚨 ACT for ALS was just reintroduced in the Senate. This bill helps speed access to treatments + support people living with ALS. Ask your Senator to cosponsor 👇 bit.ly/fundALS