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iamals.bsky.social @iamals.bsky.social · 21h

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

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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

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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

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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

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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

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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.

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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.

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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

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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

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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

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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! 👇

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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

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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

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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

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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

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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

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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

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iamals.bsky.social @iamals.bsky.social · 14/09/2026

Because of ACT for ALS, research has grown and transformed: 50% more ALS sites report they're ready to offer clinical trials, and 25% more sites are offering expanded access to people with ALS. Let's keep advocating for ALS research funding. Donate today: bit.ly/giveWOI

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iamals.bsky.social @iamals.bsky.social · 14/09/2026

Happy birthday, Erin! 🎉 Since her diagnosis at 23, Erin has dispelled myths about ALS, advocated for research, and demanded better accessibility in public spaces. She also loves the outdoors, has amazing tattoos, and always has a joke ready. Say "Happy birthday, Erin"👇👇

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iamals.bsky.social @iamals.bsky.social · 13/09/2026

The I AM ALS community secured historic research funding, held record-breaking meetings with lawmakers, and drove massive legislative action. We're closer than ever to a cure. Next week is Week of Impact. Be part of it: bit.ly/weekofimpact #WeekOfImpact #EndALS

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iamals.bsky.social @iamals.bsky.social · 13/09/2026

The House wants to leave DC early. We want them to pass ACT for ALS before they go. We hit 1,600 petition signatures in the first 48 hours. Now let’s get even more before Congress is back tomorrow. Petition closes TONIGHT. Sign + share: bit.ly/passA4A

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iamals.bsky.social @iamals.bsky.social · 13/09/2026

ACT for ALS is not just a bill. It’s hope for families still searching for answers and the fastest path to a cure for the 98% of ALS patients still waiting. Congress returns on Monday. Time is running out. Sign the petition: bit.ly/passA4A

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iamals.bsky.social @iamals.bsky.social · 12/09/2026

Thanks to YOUR advocacy, we’re closer than ever to ending ALS. But we’re not done. Congress is listening. Our community is growing. Now we need to keep pushing. Week of Impact starts next week. Set up your page and start fundraising: bit.ly/weekofimpact

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iamals.bsky.social @iamals.bsky.social · 12/09/2026

Isabel and Gerardo hosted a Rebel Heart Dynamite watch party in Long Beach, complete with wrestling signs, a raffle, and Rebel Heart shirts raising funds for I AM ALS and Team Gleason. It also happened to be Gerardo's birthday. This is what community looks like. ♥️ Join the moment: bit.ly/withrebel

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iamals.bsky.social @iamals.bsky.social · 11/09/2026

"Reauthorization of ACT for ALS is critical"—Dr. Jinsy Andrews, ALS Neurologist Congress has 3 days next week to pass ACT for ALS before it expires September 30. We're at 1,600 signatures. Add yours and push Congress to schedule the vote → bit.ly/passA4A

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iamals.bsky.social @iamals.bsky.social · 11/09/2026

Today, we remember the lives lost on September 11, 2001, and honor all those forever changed by that day. Veterans are more than 2x as likely as civilians to be diagnosed with ALS. Let’s ensure their families have the support they need. Pass the Justice for ALS Veterans Act: bit.ly/ALSvets

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iamals.bsky.social @iamals.bsky.social · 10/09/2026

⏰ Week of Impact is just 4 days away! What you do next week can help accelerate progress toward a cure for ALS. Don’t wait. Set up your fundraising page and start raising today: bit.ly/weekofimpact

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iamals.bsky.social @iamals.bsky.social · 10/09/2026

Community is how we end ALS. Thank you to everyone who showed up for Rebel Heart Dynamite last night. Together, we raised $80K to help advocate for legislation, therapy access, and support for impacted families, moving us closer to a world without ALS. Keep it going: bit.ly/withrebel

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iamals.bsky.social @iamals.bsky.social · 10/09/2026

The House has 1 WEEK to finish the job on ACT for ALS before it expires Sept. 30. This isn't just another bill. It has put investigational drugs into patients' bodies and built a more coordinated, better-funded ALS research landscape. ALS doesn't wait. Neither should Congress. Sign: bit.ly/passA4A

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iamals.bsky.social @iamals.bsky.social · 10/09/2026

Rebel Heart Dynamite was incredible! Thank you @aew @aewtogether @rebeltanea @official1fw and @teamgleason for helping raise funds & awareness to end ALS. In Rebel's words: "We're almost there. We can do it!" Missed it? Join Rebel: bit.ly/withrebel

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iamals.bsky.social @iamals.bsky.social · 09/09/2026

We're down to days, not weeks, to pass ACT for ALS. The House and Senate have each passed their own nearly identical bill. The only thing left is getting them to match. Sept. 14–17 is the window. Tell Congress to FINISH THE JOB! bit.ly/passA4A

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iamals.bsky.social @iamals.bsky.social · 09/09/2026

The CONNECT for Health Act would expand access to vital telehealth services, making it easier for people living with ALS to receive care from home. Learn more and take action: bit.ly/ALSConnect

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iamals.bsky.social @iamals.bsky.social · 09/09/2026

Flag submissions are open for 2027! The deadline isn't until March 1, 2027, but don't wait. Flags are being prepared all year long. Request your flag today: bit.ly/flags-27

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iamals.bsky.social @iamals.bsky.social · 08/09/2026

Happy Birthday to the amazing Tanea "Rebel" Brooks! 🎁🎉🎂 Your drive, grit, relentless advocacy, and loving heart continue to wow us. We're lucky to have you as an I AM ALS Ambassador and partner in this movement. 💙 Wish Rebel a happy birthday! 👇

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iamals.bsky.social @iamals.bsky.social · 08/09/2026

🚨 Week of Impact is NEXT WEEK! 🚨 We are closer to ending ALS than at any point in history—because of what YOU have done. Let’s fuel the movement for a cure, together. Make an impact: bit.ly/weekofimpact

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