Sign in

iamals.bsky.social

@iamals.bsky.social
352 followers 20 following 867 posts

I AM ALS is the largest community movement made up of the very people living with, impacted by, and highly motivated to end ALS. We’re fueled by urgency to find a cure and a track record of real impact.

PostsRepliesMedia
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
The image is an announcement with siren icons at the top. It states the tracking of the ACT for ALS bill, mentioning the President has 10 days to sign it once it reaches the desk. If not signed, it becomes law after 10 days. The bill hasn't left Congress yet. It encourages reminding Congress of support and includes a link: bit.ly/A4A-TY. The "I AM ALS" logo is in the corner.
020
iamals.bsky.social @iamals.bsky.social · 6h
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
Pat Dolan smiling while lying on a pillow, wearing a blue shirt and a tracheostomy tube.
000
iamals.bsky.social @iamals.bsky.social · 20h
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 👇
The image features a message from the I AM ALS community, highlighting the sending of over 95,000 emails to Congress to support the ACT for ALS initiative. Three individuals are shown: Garrett May, Troy Fields, Jack Silva, and Teri McCormick, all of whom are co-chairs or advocates for ALS, with brief personal connections to the cause mentioned. A note at the bottom acknowledges the contributions of the Legislative Affairs Team. The I AM ALS logo is present.
010
iamals.bsky.social @iamals.bsky.social · 07/10/2026
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
031
iamals.bsky.social @iamals.bsky.social · 06/10/2026
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
010
iamals.bsky.social @iamals.bsky.social · 06/10/2026
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.
Brian, Sandra, and a professional in a suit on a stage. Sandra holds Brian's hand while Brian sits in his electric wheelchair in the middle.
020
iamals.bsky.social @iamals.bsky.social · 05/10/2026
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
000
iamals.bsky.social @iamals.bsky.social · 05/10/2026
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
041
iamals.bsky.social @iamals.bsky.social · 04/10/2026
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
020
iamals.bsky.social @iamals.bsky.social · 04/10/2026
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
041
iamals.bsky.social @iamals.bsky.social · 03/10/2026
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
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.social
Maggie Tassi @maggietassi.bsky.social · 02/10/2026
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
011
iamals.bsky.social @iamals.bsky.social · 02/10/2026
The 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 · 02/10/2026
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."
060
iamals.bsky.social @iamals.bsky.social · 02/10/2026
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 ↓
030
iamals.bsky.social @iamals.bsky.social · 01/10/2026
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
020
iamals.bsky.social @iamals.bsky.social · 30/09/2026
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
031
iamals.bsky.social @iamals.bsky.social · 29/09/2026
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
094
iamals.bsky.social @iamals.bsky.social · 29/09/2026
ACT 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 · 28/09/2026
It 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 · 27/09/2026
We'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 · 27/09/2026
ACT 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 · 26/09/2026
Big 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 · 25/09/2026
Together, 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 · 24/09/2026
Reminder: 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 · 24/09/2026
ACT 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 · 23/09/2026
Meet 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 · 22/09/2026
Today, 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 · 22/09/2026
If 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 · 22/09/2026
Today'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 · 21/09/2026
Community: 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 · 21/09/2026
LAST 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 · 20/09/2026
ACT 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 · 20/09/2026
Federal 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 · 19/09/2026
Thanks 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 · 18/09/2026
We'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 · 18/09/2026
We'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 · 18/09/2026
When 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 · 18/09/2026
We'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 · 17/09/2026
With 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 · 17/09/2026
What 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 · 17/09/2026
Today 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 · 15/09/2026
Together, 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 · 15/09/2026
THANK 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 · 15/09/2026
This 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 · 14/09/2026
Happy 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