iamals.bsky.social @iamals.bsky.social · 3h🚨 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 020
iamals.bsky.social @iamals.bsky.social · 6hWe 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 000
iamals.bsky.social @iamals.bsky.social · 20hThank 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 👇 010
iamals.bsky.social @iamals.bsky.social · 07/10/2026Meet 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 031
iamals.bsky.social @iamals.bsky.social · 06/10/2026ACT 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 010
iamals.bsky.social @iamals.bsky.social · 06/10/2026Our 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. 020
iamals.bsky.social @iamals.bsky.social · 05/10/2026A 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 000
iamals.bsky.social @iamals.bsky.social · 05/10/2026The 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 041
iamals.bsky.social @iamals.bsky.social · 04/10/2026Got 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 020
iamals.bsky.social @iamals.bsky.social · 04/10/2026Community, 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 041
iamals.bsky.social @iamals.bsky.social · 03/10/2026As 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 050
iamals.bsky.social @iamals.bsky.social · 02/10/2026**Adding Fred Standish to this list. We're carrying his name with us alongside everyone named here. 000
Reposted by @iamals.bsky.socialMaggie Tassi @maggietassi.bsky.social · 02/10/2026This 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 011
iamals.bsky.social @iamals.bsky.social · 02/10/2026The Senate passed ACT for ALS! As we await the President's signature, we honor those who advocated, testified, and told their stories but didn't live to see this day. Their courage is written into this law. We carry their names with us. Rest in power. #ACTforALS #EndALS 121
iamals.bsky.social @iamals.bsky.social · 02/10/2026We 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." 060
iamals.bsky.social @iamals.bsky.social · 02/10/2026ACT 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 ↓ 030
iamals.bsky.social @iamals.bsky.social · 01/10/2026The 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 020
iamals.bsky.social @iamals.bsky.social · 30/09/2026Reauthorizing 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 031
iamals.bsky.social @iamals.bsky.social · 29/09/2026ACT 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 094
iamals.bsky.social @iamals.bsky.social · 29/09/2026ACT for ALS passed Congress with ONE DAY to spare! 🎉 Your emails, calls, meetings, petition signatures & relentless advocacy made this possible. THANK YOU! Thank our congressional champions: bit.ly/A4A-TY Keep this work going: bit.ly/giveALS 0115
iamals.bsky.social @iamals.bsky.social · 28/09/2026It is with a heavy heart that we share that Justin Upchurch passed away last Thursday. Justin met ALS with honesty, humor, and a fierce commitment to living fully. "ALS may determine how or why I die. I will not allow it to determine how I live my life"—Justin Read his story: bit.ly/justinupchurch 011
iamals.bsky.social @iamals.bsky.social · 27/09/2026We've had 430+ meetings with legislators this year, keeping ACT for ALS a priority on the Hill. ALS moves fast, but so can we. 3 days left to reauthorize ACT for ALS before it expires Sept 30. Tell your senators to finish the job. 🔗 bit.ly/fundALS 010
iamals.bsky.social @iamals.bsky.social · 27/09/2026ACT for ALS expands access to potential treatments. In just 4 days, our community gathered 20,100+ petition signatures urging Congress to reauthorize it. It expires next Wednesday. Tell your legislators to act now. 🔗 bit.ly/fundALS 033
iamals.bsky.social @iamals.bsky.social · 26/09/2026Big news: PREVENT ALL ALS has hit its enrollment goal, thanks to this incredible community. 🎉 Enrollment remains open until September 30. If you have an increased genetic risk of ALS, here is your invitation to join. Visit all-als.org or email info@all-als.org to learn more. 000
iamals.bsky.social @iamals.bsky.social · 25/09/2026Together, we sent 95,000+ emails to legislators for ACT for ALS this year. This bill is the fastest path to curing ALS, and it expires in 5 DAYS. Let's protect the progress it's made. Tell your legislators to reauthorize it. 🔗 bit.ly/fundALS 000
iamals.bsky.social @iamals.bsky.social · 24/09/2026Reminder: Flag submissions are open for 2027! We invite you to submit the names of people living with ALS, familial gene carriers, and people who have passed from ALS. Request your flag at bit.ly/flags-27 000
iamals.bsky.social @iamals.bsky.social · 24/09/2026ACT for ALS changed what's possible in ALS. In 2021, I AM ALS's advocacy saw it from drafting through passage, securing historic funding, wider access to therapies, and breakthroughs toward a cure. It expires next week. Let's finish what we started: bit.ly/fundALS 022
iamals.bsky.social @iamals.bsky.social · 23/09/2026Meet Will Plews-Ogan: former ALS caregiver, now marathoner with a mission! After losing Jim in July 2024, Will and his family launched Hummingbird Fund. Will is lacing up with Team I AM ALS to run the TCS NYC Marathon, and he's already crushed $7,000 of his $20,000 goal! Support Will: bit.ly/WillIAA 000
iamals.bsky.social @iamals.bsky.social · 22/09/2026Today, organizations that represent the ALS community came together to urge Senate Leadership to pass ACT for ALS before critical programs expire on September 30. Urgency is not just a talking point for people with ALS—it is our reality. Take action: bit.ly/fundALS 021
iamals.bsky.social @iamals.bsky.social · 22/09/2026If we do not reauthorize ACT for ALS, patients across the country will lose access to treatments that are keeping them alive."—Sandra Abrevaya, I AM ALS co-founder 800+ patients have received treatments. Tell your senators: reauthorize ACT for ALS today! bit.ly/fundALS 📸: Stephen Voss 040
iamals.bsky.social @iamals.bsky.social · 22/09/2026Today's the last day of Week of Impact! Thank you to everyone who shared their story, fundraised, and spread the word this week. We're closer than ever to a world without ALS. Let's finish strong. Donate $8 today: bit.ly/giveWOI 011
iamals.bsky.social @iamals.bsky.social · 21/09/2026Community: we're extending our Week of Impact deadline to tomorrow! We've raised $100K+ so far, and every dollar brings us closer to a world without ALS. Donate $8 today and help us hit our goal: bit.ly/giveWOI 000
iamals.bsky.social @iamals.bsky.social · 21/09/2026LAST PUSH: ACT for ALS expires September 30. Our community drafted this bill, championed it, and saw it pass in 2021. If it lapses now, people with ALS could wait months they don't have. Protect our progress toward a cure. Tell your senators: Pass the bill → bit.ly/fundALS 022
iamals.bsky.social @iamals.bsky.social · 20/09/2026ACT for ALS expires in 10 DAYS. This bill exists because of what this community has done: hundreds accessing promising ALS therapies, research more coordinated than ever, historic federal funding secured. Don't let it stall. Tell Congress to finish the job: bit.ly/fundALS 010
iamals.bsky.social @iamals.bsky.social · 20/09/2026Federal ALS funding was low for decades, but this movement refused to accept the status quo. We doubled ALS funding at the Department of Defense, twice, and there's now a proposal to double it again in 2027, from $40M to $80M. Donate today: bit.ly/giveWOI 000
iamals.bsky.social @iamals.bsky.social · 19/09/2026Thanks to YOUR advocacy, I AM ALS has helped unlock more than $1.6 billion for federal ALS research. It's the largest investment in U.S. history. Let's keep the momentum going: bit.ly/giveWOI 121
iamals.bsky.social @iamals.bsky.social · 18/09/2026We're close to new ALS treatments and can't slow down now. This week: 20,000+ petition signatures, 3,000+ emails, and in-person visits from our co-chairs, board, and staff. Both chambers passed the bill. It expires Sept 30. Tell your senators: PASS THE BILL. bit.ly/fundALS 031
iamals.bsky.social @iamals.bsky.social · 18/09/2026We're 99% of the way to reauthorizing ACT for ALS. That last 1% is where you come in. Tell your senators to pass the bill: bit.ly/fundALS 020
iamals.bsky.social @iamals.bsky.social · 18/09/2026When we renew ACT for ALS, this community will have secured another $500 million in federal funding for ALS treatments and research. Help fund our advocacy: bit.ly/giveWOI 020
iamals.bsky.social @iamals.bsky.social · 18/09/2026We're on the cusp of new ALS treatments, and every dollar brings us closer. 3 days left in Week of Impact. Every gift counts. Donate: bit.ly/giveWOI Let's fuel the movement. 021
iamals.bsky.social @iamals.bsky.social · 18/09/2026🚨 You all know that ACT for ALS expires Sept 30. Tell the Senate that they MUST pass this bill — for ALS research funding, access to treatments, and progress toward a cure. Take action: bit.ly/fundALS 010
iamals.bsky.social @iamals.bsky.social · 17/09/2026With your support, I AM ALS has made historic strides towards ending ALS. One of the biggest wins this year was securing $313 million in federal ALS funding. Let's keep pushing until ALS itself is history. Donate to end ALS → bit.ly/giveWOI 020
iamals.bsky.social @iamals.bsky.social · 17/09/2026What a Week of Impact. Thank you for fueling the movement to end ALS. And now it's even better: Dan Tate, Jr. is matching every dollar raised from today, up to $15,000. That's $30,000 for ALS research, advocacy, and access to promising therapies. Donate: bit.ly/giveWOI 010
iamals.bsky.social @iamals.bsky.social · 17/09/2026Today is Sandra Abrevaya's birthday! 🎉 You know her as the legendary co-founder of I AM ALS, a force of nature leading the charge for ALS advocacy nationwide. Even today, she's on Capitol Hill working toward ACT for ALS. Celebrate her — drop your birthday wishes below! 👇 030
iamals.bsky.social @iamals.bsky.social · 17/09/2026🚨 The House went home early, so we're pivoting. Now we pressure the Senate, which is still in session. We're pushing for the more than 800 people living with ALS who've gained access to promising therapies through ACT for ALS-funded EAPs. Pressure the Senate with us: bit.ly/fundALS 010
iamals.bsky.social @iamals.bsky.social · 16/09/2026🎃 Tomorrow! A talent show so fun it's downright wicked. Raphael's inviting you! Sing, play, joke, draw, show off your pet — or surprise us. 🎤🐾 📅 Thurs, Sept 17 | 5 PM ET 💙 $10–$25 suggested RSVP: bit.ly/IAATalent #IAMALS 010
iamals.bsky.social @iamals.bsky.social · 15/09/2026Together, we gathered a whopping 20,000+ signatures to move Congress towards scheduling a vote! The House is only in session for 3 MORE DAYS and we NEED to pass this bill this month. Contact your rep NOW: bit.ly/fundALS 010
iamals.bsky.social @iamals.bsky.social · 15/09/2026THANK YOU!! In just 4 days, we collected more than 20,000 signatures telling the House & Senate to GET THIS DONE now, and delivered this powerful video along with the petition. Tell your own rep about the petition & our national push to finish the job: bit.ly/fundALS 062
iamals.bsky.social @iamals.bsky.social · 15/09/2026This year, the I AM ALS community reached 11.8B people and logged 13,451 legislative actions. In just five days, our ACT for ALS push alone drove: 📢 20,498 legislative actions ✍️ 20,148 petition signatures 📱 34,500 social engagements Donate today: bit.ly/giveWOI 011
iamals.bsky.social @iamals.bsky.social · 14/09/2026Happy Week of Impact 💥 Set up your fundraising page, and you're fueling the movement toward a world without ALS, plus you'll be in the running for the chance to win a prize for storytelling, donors, fundraising total, and more. Set up your page: bit.ly/weekofimpact 010