We are heartbroken by the passing of our friend @realericdane —a fierce advocate, a generous spirit, and a true champion in the movement to end ALS.
Eric used his platform not for attention, but for action. From the moment he joined I AM ALS, he showed up with courage and conviction, asking how he could use his superpowers to help the movement grow. It was an honor to brainstorm with him, to walk alongside him in the halls of Congress on behalf of our community, amplify the urgent need for ACT for ALS and research funding, and drive toward treatments and, ultimately, a cure. He understood that ALS is not just a diagnosis; it is a call to action for families, for answers, and for change.
Eric brought humility, humor, and visibility to ALS and reminded the world that progress is possible when we refuse to remain silent. Eric was more than a supporter of our mission—he was part of our family. His impact will live on in the research being funded, the policies being advanced, and the community he helped grow by his honesty, his bravery, and his belief in a better future for anyone struggling with this diagnosis.
We honor Eric by continuing the work he believed in so deeply: mobilizing communities, driving critical research, securing essential funding, and fighting relentlessly for real solutions.
Our thoughts are with his loved ones and our entire community. I AM ALS will carry his legacy forward—until ALS is no more.
If you’re just joining us, you’re probably wondering: what exactly is ALS?
We hope you’ll help us raise awareness about this disease by sharing this post! Take action to end ALS today at iamals.org/progress.
⚾ ONLY 2 WEEKS UNTIL LOU GEHRIG DAY ⚾
Join us at a game near you to:
💙 Raise ALS awareness
🤝 Build meaningful community connections
⚾ Celebrate and have fun together at the ballpark
We can’t wait to see this community show up strong and LOUD across the country.
🎟 Find your game: bit.ly/lgd-26
🚨 BIG ADVOCACY WIN 🚨
The ACT for ALS just reached 60 cosponsors this week! 🎉
We said it before, and we’ll say it again — our advocacy works. 💪
Every email sent, every call made, every story shared is helping move this legislation forward.
Now let’s keep the pressure on to secure historic ALS research funding and expand access to potential therapies for the ALS community.
🔥 Help us get this across the finish line: bit.ly/fundALS
"This flag is a way to honor my mom. It means we keep saying her name. It means I don’t leave the ALS community. 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, in some ways, and we continue to heal."
- Stacie Winslow, lost her mother to ALS
Thank you @fox5dc , @nbc10boston , WCAX, ABC, and CBS for helping share our community’s stories 💙
Every story shared helps people living with ALS and families impacted by ALS feel less alone — and brings more advocates into this movement.
In gratitude,
I AM ALS
So lovely connecting with our friends from @hopelovescompany at the Gathering last week 💙
Grateful for partners and community leaders across the ALS community who continue to lead with compassion, urgency, and shared purpose.
Looking for your flag photo? 💙 We hope to share all the photos in the next week.
Join our newsletter so you’ll be first to get the public link when it drops.
🔗 bit.ly/News4ALS
Last week in D.C. 🇺🇸 our Veterans Team honored Health Legislative Assistants with custom @brothagency figurines to thank them for their leadership and advocacy for Veterans living with ALS.
Huge thanks to the offices of Reps. @repkencalvert , @repjasoncrow & @repterriasewell for continuing to stand with the ALS community. 💙
The 2026 I AM ALS Flag Ceremony was unforgettable 💙
Our community showed up, spoke out, and made it impossible for Congress to ignore the urgency of ALS. The momentum is real — ACT for ALS just hit 44 cosponsors!
Contact your legislator to keep the momentum going → bit.ly/fundALS
