iamals.bsky.social

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

“…inspired a community, a community that continually renews itself, welcomes new advocates, develops new leaders, and ensures that every generation is ready to fight for the next breakthrough.”—Troy Fields Thank your lawmakers for reauthorizing ACT for ALS! 🔗: bit.ly/A4A-TY

🚨 ACT for ALS UPDATE 🚨 The president has about 10 days (minus Sundays and holidays, etc.) to sign the ACT for ALS, or it becomes law automatically. This happened because of YOUR actions! While we wait, thank your legislators: bit.ly/A4A-TY

There is no cure for ALS, but multidisciplinary clinics have been shown to extend survival and improve quality of life. The ALS Better Care Act would strengthen these clinics by improving Medicare reimbursement and help accelerate ALS clinical trials. Tell your lawmakers: bit.ly/ALSbettercare

Joining an I AM ALS community team is a great way to build lasting friendships, make an impact, and help end ALS. Work with your favorite sports team, meet your legislator, advocate for more accessible clinical trials. There are SO many ways to make a difference. Find a team: bit.ly/vol4ALS

Want to help us pass more critical ALS legislation? Become a Consented Constituent today! It's low-commitment and low-effort. With just 2 minutes of your time, you can help move the needle for ALS! Join the movement: bit.ly/ALSconstituents

ALS can be overwhelming and isolating. At I AM ALS, you can find community and the support you need. The I AM ALS Peer Support Program offers helpful information, resources, and a listening ear. We also check in to make sure you’re taken care of. Request support: bit.ly/peerintake

Caregivers! November is National Family Caregivers Month, and we're centering YOUR experiences. Join us for two caregiver-led conversations: Nov 4, 8 PM ET | Getting Started: bit.ly/NCM-1 Nov 18, 8 PM ET | Navigating the Journey: bit.ly/NCM-2 See you there!

I AM ALS CEO Andrea Goodman on the historic news of renewing ACT for ALS, with 5 more years of impact. Thank your legislators for making this possible: bit.ly/A4A-TY (case-sensitive) Thank you Fox 5 DC for covering this powerful story!

“ALS is what I have, not who I am.” — Neil | living with ALS ACT for ALS offers hope and an accelerated path to finding cures for thousands of people like Neil. Let Congress know how much we appreciate their partnership in getting it renewed → bit.ly/A4A-TY

Our stories are the foundation of everything we've achieved together. When we share our experiences, we give ALS a human face and send a message no one can ignore: we need a cure NOW. Help us end ALS. Share your ALS story today: bit.ly/story-26

🚨 ACT for ALS UPDATE! Thanks to the I AM ALS community's advocacy, Congress has passed ACT for ALS. But our work isn't done yet. Let's protect the federal ALS research dollars we advocated for. Tell Congress to prioritize ALS funding this December: bit.ly/ALSFY-27

Current policy requires Veterans to have lived with ALS for 8 years for their spouses to receive DIC benefits. Most people with ALS live only 2-5, so families don’t qualify. Let’s fix this injustice. Tell your lawmakers to cosponsor the Justice for ALS Veterans Act: bit.ly/ALSvets

Our advocacy has changed what’s possible in ALS, one small action at a time. Join this movement and help end ALS in a few minutes: (1) sign up for our newsletter, (2) get quick online actions, (3) do them your way. Sign up TODAY: bit.ly/news4ALS

A NEW STEP FORWARD! 💡 CNM-Au8, available through ACT for ALS-funded expanded access programs, has been submitted to the FDA. If approved, it could reach everyone in the U.S. living with ALS in 2027. People with ALS don’t have time to wait.

Our incredible community member Dave Hardin put a fun twist on the Ice Bucket Challenge earlier this month! Great food, freezing water dumped out of tractors, and funds and awareness raised for ALS. 💙 Join the movement: bit.ly/ALS-next

Caregivers! You’re invited to two caregiver-led conversations with the I AM ALS community ✨ Getting Started | Nov 4 at 8PM ET bit.ly/NCM-1 Navigating the Journey | Nov 18 at 8PM ET bit.ly/NCM-2 Connect, ask questions, and learn from caregivers who have been there. RSVP today!

Calling ALL ALS Advocates 📢 Small online actions add up to historic wins. With just a few minutes of your time, you can get us closer to a world without ALS! 💙 We need advocates from every state and district in this movement. Become a consented constituent today 👉 bit.ly/ALSconstituents

GO TEAM I AM ALS!! 🏁🏆⚡ Our powerhouse New York marathon runners breezed past their $75,000 goal by over $12,000 and counting, with over 2 weeks left until race day! Support our phenomenal TCS NYC Marathon 2026 team: bit.ly/Marathon-26 (case-sensitive)

The I AM ALS community’s advocacy work is up for a Community Voice Award, and we need YOUR help to win! A win would help more people impacted by ALS find us. Vote by Oct 29: bit.ly/IAA-Anthem. Find “Push for Progress” and click “Celebrate”!

The I AM ALS community is here to support you through the challenges of ALS. Need someone to talk to? We have a support group for you. Want 1-on-1 support? We’ll match you with a trained Peer Mentor or Peer Support Specialist impacted with ALS themselves. 🔗: bit.ly/GetALSSupport

The thank yous continue! Volunteers, co-chairs, advocates, friends, and everyone who found us through the petition: you helped get ACT for ALS across the finish line—THANK YOU! 💙 Now thank your lawmakers for standing with the I AM ALS community: bit.ly/A4A-TY

The Healthy Brains Act would help us better understand the root causes of ALS and other neurodegenerative diseases. Once passed, it will launch the first-ever research program on environmental risk factors. Tell your legislators to support it → bit.ly/HBA-26

Welcome our first-ever I AM ALS Honorary Board Member: Tanea "Rebel" Brooks!! “Advocacy for ALS is a major priority in my battle, and I plan to continue to fight the good fight with I AM ALS to find a cure and help others get access to treatment.”—Rebel bit.ly/withrebel

Congratulations, community! 🎉 Thanks to YOUR advocacy, hard work, and unwavering support, our community’s Push for Progress campaign was chosen out of 2,500+ projects worldwide as a finalist for a 2026 Anthem Award! Click “Celebrate” here to vote for I AM ALS: bit.ly/IAA-Anthem

Dan Tate, Jr. took the stage at ARPA-H’s BIOGAMI kick-off to share the urgency of ALS with researchers. This year, I AM ALS advocated for and helped secure $30M for ARPA-H, and they’re on the fast path to learning more about this category of diseases.

Alongside our partners at Protected Tomorrows, we are proud to announce the nation’s first-ever ALS Financial Wellness Program! Designed for people living with ALS and caregivers, from health insurance to estate planning. Kicks off today: Oct. 13. Sign up: https://bit.ly/peerintake

We asked a few community members what ACT for ALS meant to them. There was one common thread: hope. Tell your lawmakers what it means to you: bit.ly/A4A-TY

Short on time but want to help build a world without ALS? Become a consented constituent today. It's a quick, easy way to help move key ALS legislation forward. Sign up: bit.ly/ALSconstituents

“What the heck is ALS? Why is my body failing me? What do I tell my family?” The latest Let’s Talk About It: A Mental Health Series conversation is Oct 22 at 6 PM ET, with the Many Shades of ALS Community Team and guests from Loma Linda University Health. RSVP: bit.ly/letstalkALS

It's Brian Wallach's 46th birthday! Join us in celebrating @bsw5020.bsky.social today by commenting with your very own "Good night moon 🌙" message of hope, making a donation in increments of $4.60 or $46 here: bit.ly/giveALS or taking an ALS action today: bit.ly/ALS-Action

Thank you, Rebel, Rebecca Gayheart Dane, Erin Taylor, Katie Couric, and Erin Tatum for advocating for ACT for ALS! 🙌 They've used their platforms to bring thousands of new people into this movement and strengthen our calls for progress towards a cure.

🚨 ACT for ALS passed Congress, but hasn't reached the President's desk yet. Once it does, he has 10 days to sign it. If he doesn't sign after day 10, the bill automatically becomes law. We'll update you once anything changes. For now, thank your lawmakers: bit.ly/A4A-TY

We are deeply saddened by the passing of our dear friend and community member, Pat Dolan. Pat broke many of the most overwhelming barriers in the ALS landscape. He built Pat's maps and founded GeoALS to connect people with ALS to care and research. We'll miss you, Pat. www.geoals.org/about

Thank you to our Legislative Affairs Team for leading our work to reauthorize ACT for ALS! This community sent 95,000+ emails to lawmakers this year, and Congress heard us. The bill passed unanimously last week. Leave a note for the team below 👇

Meet Jenny 🏃👟🏃 Jenny DeVaughn is training for her first marathon, the TCS NYC Marathon on Nov. 1. We're so lucky to have her on Team I AM ALS. "I would be honored to carry their courage across that finish line." Cheer Jenny on at bit.ly/JennyIAA

ACT for ALS passed because champions like Steve Gleason refused to take "later" for an answer. Steve, we are so lucky to have you. Thank you for everything you've done to keep ACT for ALS a priority. Thank your legislators for passing ACT for ALS → bit.ly/A4A-TY

Our founders @bsw5020.bsky.social and Sandra Abrevaya set the tone for collective community power at today’s @milkeninstitute.org Patient Advocacy Forum and shared how we use storytelling, government strategy, and volunteer leadership to drive impact.

A HUGE thank you to our ALS congressional champions for getting ACT for ALS across the finish line this week! Our community has been advocating for this critical ALS legislation for years. Let Congress know how much we appreciate their support. Continue thanking YOUR legislators at bit.ly/A4A-TY

The U.S. is in a caregiver crisis. Caregiving is time-consuming, exhausting, and expensive, and for ALS caregivers, it only gets more expensive as the disease progresses. Tell Congress to pass the Credit for Caring Act: bit.ly/credit4care

Got 2 minutes? That's all it takes to become a Consented Constituent and help us pass critical ALS legislation. Easy way to make a real difference. Join the movement: bit.ly/ALSconstituents

Community, Meet Kellie! 🏃‍♀️🎽 After her father, Brian, was diagnosed with bulbar-onset ALS in 2022, Kellie felt drawn to the ALS movement. Kellie is close to the halfway mark, and YOU can help get her closer to hitting her goal. Support Kellie → bit.ly/KellieIAA

As we round up this incredible week of wins, a huge thank you to AEW, AEW Together, and 1FW for being dedicated partners in the movement to end ALS! Thank you for your advocacy! Want to join Rebel in the ring? Step in → bit.ly/withRebel

This week, my inbox has been filled with celebrations about the reauthorization of #ACTforALS and messages remembering those we've lost. Thank you, @neguse.house.gov for your leadership in the Congressional ALS Caucus, and for standing with families like mine. @iamals.bsky.social

We are heartbroken to announce that our friend Brooke Eby has passed away. She changed the world. We will always remember how she contributed to the movement and lived fully and unapologetically: "Through the support of my family, friends, and work, I’ve been able to laugh in the face of ALS."

ACT for ALS has always been a community effort, and we couldn't be prouder to stand with you in this movement. Let's celebrate what we've accomplished together! Tell us how you feel now that ACT for ALS has FINALLY passed Congress in the comments ↓

The ACT for ALS celebration continues! Yesterday, Board Member & Veterans' Team co-chair Tim Abeska delivered figurines to Congressional champions like Reps. Quigley and DeLauro. Thank your legislators for getting ACT for ALS across the finish line: bit.ly/A4A-TY

Reauthorizing ACT for ALS this week wouldn't have been possible without our incredible volunteers and Community Teams. Join us tomorrow, Oct. 1st at 2 pm EST for our first-ever I AM ALS Virtual Open House to hear what it takes to keep this movement going! RSVP: bit.ly/IAAOpenHouse

ACT for ALS protects $500M in federal ALS research funding over the next 5 years! Our community, legislative champions, allies, and advocates overcame huge hurdles to get this bill passed. We’re incredibly grateful. Thank your legislators: bit.ly/A4A-TY