iiinova — where your digital self keeps evolving

Matt Rocheleau @mrochele.bsky.social · 03/10/2026

Listen to the full interview with Mindy Henderson of the Muscular Dystrophy Association: audioboom.com/posts/833722... And read this beautiful remembrance by Mindy: mdaquest.org/remembering-... #ALS #ALSAwareness #EndALS #MND #BrookeEby

010

Matt Rocheleau @mrochele.bsky.social · 03/10/2026

She added: “There’s no survivors. So, we don’t have these survivor groups to help advocate for us. And so, I think we all have a purpose ahead of us, and we just use our different strengths to approach it.” Thank you, Brooke. Your voice helped me find mine.

110

Matt Rocheleau @mrochele.bsky.social · 03/10/2026

Brooke put it this way: “I happen to be a slow progressor, and therefore I can use my voice to spread awareness. But the advocacy landscape is so tough with ALS because people die so quickly that we don’t have enough time for people to spread their story and spread awareness.”

110

Matt Rocheleau @mrochele.bsky.social · 03/10/2026

In 2023, a few months after doctors told me I had a relatively slow-progressing form of ALS, I listened to fellow 30-something-year-old Brooke Eby talk about how her journey living with and advocating around this disease had become her “path” and her “purpose.” It inspired me to get involved.

130

Reposted by Matt Rocheleau

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

Reposted by Matt Rocheleau

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

Reposted by Matt Rocheleau

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

Reposted by Matt Rocheleau

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

Reposted by Matt Rocheleau

Matt Rocheleau @mrochele.bsky.social · 21/09/2026

Both chambers of Congress unanimously passed this bipartisan bill to maintain $500m in vital #ALS research funding. But it’s stalled due to minor wording differences. The deadline is days away. Take 1 minute & tell your senators to FINISH THE JOB www.iamals.org/reauthorize-...

iamals.org

Reauthorize the ACT for ALS! - I AM ALS - ALS is Relentless. So Are We!

ACT for ALS gets us closer to a cure for ALS. Help us reauthorize this critical piece of legislation before it expires in September 2026!

011

Reposted by Matt Rocheleau

Matt Rocheleau @mrochele.bsky.social · 21/09/2026

www.iamals.org/reauthorize-... iamals.donordrive.com/participant/... @iamals.bsky.social

011

Matt Rocheleau @mrochele.bsky.social · 21/09/2026

www.iamals.org/reauthorize-... iamals.donordrive.com/participant/... @iamals.bsky.social

011

Reposted by Matt Rocheleau

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

Matt Rocheleau @mrochele.bsky.social · 21/09/2026

iamals.org

Reauthorize the ACT for ALS! - I AM ALS - ALS is Relentless. So Are We!

ACT for ALS gets us closer to a cure for ALS. Help us reauthorize this critical piece of legislation before it expires in September 2026!

011

Reposted by Matt Rocheleau

Matt Rocheleau @mrochele.bsky.social · 18/07/2026

Got 1 minute to secure $500 million for ALS research? Here’s the best thing you can do right now to help everyone living with #ALS It only takes a minute, & it’s totally free. Watch for instructions 🎥 Link: www.iamals.org/reauthorize-... 🔗 #ALSAwareness #EndALS #MND @iamals.bsky.social

011

Reposted by Matt Rocheleau

Matt Rocheleau @mrochele.bsky.social · 18/09/2026

I’m aiming to raise $5,000 for I AM ALS, and I’m asking you to help me reach my goal. iamals.donordrive.com/participants... @iamals.bsky.social brings together people living with ALS, caregivers, loved ones, and advocates to drive progress across research, advocacy, access, and support.

011

Matt Rocheleau @mrochele.bsky.social · 18/09/2026

011

Reposted by Matt Rocheleau

Matt Rocheleau @mrochele.bsky.social · 16/09/2026

ACT for ALS expires Sept. 30 unless Congress reauthorizes it. The House is going home tomorrow — the Senate is our last shot. Tell the Senate to FINISH THE JOB: www.iamals.org/reauthorize-...

iamals.org

Reauthorize the ACT for ALS! - I AM ALS - ALS is Relentless. So Are We!

ACT for ALS gets us closer to a cure for ALS. Help us reauthorize this critical piece of legislation before it expires in September 2026!

011

Matt Rocheleau @mrochele.bsky.social · 16/09/2026

ACT for ALS expires Sept. 30 unless Congress reauthorizes it. The House is going home tomorrow — the Senate is our last shot. Tell the Senate to FINISH THE JOB: www.iamals.org/reauthorize-...

iamals.org

Reauthorize the ACT for ALS! - I AM ALS - ALS is Relentless. So Are We!

ACT for ALS gets us closer to a cure for ALS. Help us reauthorize this critical piece of legislation before it expires in September 2026!

011

Reposted by Matt Rocheleau

Matt Rocheleau @mrochele.bsky.social · 16/09/2026

Here’s a glimpse of how to live with #ALS in New York City. Donate: iamals.donordrive.com/participant/... Take action: www.iamals.org/progress #EndALS #ALSAwareness #MND @iamals.bsky.social Inspired by HBO’s How To with John Wilson @hbomax.bsky.social @hbo.bsky.social

011

Matt Rocheleau @mrochele.bsky.social · 16/09/2026

011

Matt Rocheleau @mrochele.bsky.social · 13/09/2026

The petition to tell Congress to pass ACT for ALS closes TODAY. More than 12,000 people have signed. Don’t be left out. It takes 30 seconds. Sign now: bit.ly/passA4A Please share!

010

Matt Rocheleau @mrochele.bsky.social · 09/09/2026

The House has ONE WEEK left to renew legislation that provides $500 million for ALS research. ALS doesn't wait. Neither should Congress. Tell them to vote now! 🖊️ Sign the petition and share it with everyone you know: www.iamals.org/a4apetition/

iamals.org

Finish the Job on ACT for ALS - I AM ALS - ALS is Relentless. So Are We!

A Petition to Congressional Leadership and Members of the Senate and House HELP Committees: We are in a place we didn’t want to be. It’s September and, desp ...

020

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 07/08/2026

ACT for ALS is one step closer to reauthorization! 🎉 Each vote YOU helped secure supports the largest bucket of federal ALS funding in history: ACT for ALS. Thank your legislators: bit.ly/A4A-TY

144

Matt Rocheleau @mrochele.bsky.social · 05/08/2026

BREAKING: Act for ALS officially passes Senate! 💙 While there are still a few steps before the bill — and its $500 million for ALS research — becomes law, we want to celebrate this massive milestone. Thank your legislators: www.iamals.org/thank-you-a4a/ @iamals.bsky.social #endals #alsawareness

020

Matt Rocheleau @mrochele.bsky.social · 28/07/2026

Tell Congress to increase ALS research funding to find a cure. www.iamals.org/reauthorize-... & www.iamals.org/research-fun...

010

Matt Rocheleau @mrochele.bsky.social · 28/07/2026

Tell Congress to pass the Autonomy for Disabled Veterans Act, which increases financial assistance for home accessibility modifications, helping disabled veterans adapt their homes to meet their needs. www.iamals.org/autonomy-for...

120

Matt Rocheleau @mrochele.bsky.social · 28/07/2026

Tell Congress to pass the ASSIST Act, which would expand funding for vehicle adaptations that help veterans travel more safely, maintain their independence, and improve their quality of life. www.iamals.org/assist-act/

110

Matt Rocheleau @mrochele.bsky.social · 28/07/2026

Tell Congress to pass the Justice for ALS Veterans Act. Right now, some surviving spouses of veterans with ALS are denied the benefits they’ve earned simply because ALS progresses so quickly. This bill would correct that. www.iamals.org/justice-for-...

110

Matt Rocheleau @mrochele.bsky.social · 28/07/2026

Since 9/11, an estimated 25k U.S. military veterans have been diagnosed with the terminal disease ALS — more than 3x the number of U.S. troops killed in combat during the same time, federal data shows.

110

Matt Rocheleau @mrochele.bsky.social · 28/07/2026

This green toy soldier is confined to a wheelchair, relies on a ventilator, & communicates by using their eyes to type on a screen because ALS has robbed them of the ability to move, breathe, & speak. You can help. It only takes a minute. Donate & learn more: OperationEndALS.org @iamals.bsky.social

120

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 22/07/2026

🎉 BIG WIN FOR THE ALS COMMUNITY 🎉 ACT for ALS just PASSED the House! This happened because YOU took action, but we're not stopping until the bill is signed into law. Contact your Senators today and help get ACT for ALS signed into law: bit.ly/fundALS #ActForALS #EndALS

032

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 22/07/2026

Brian & Sandra have spent 8+ years driving change for the ALS community. Thanks to Hop On A Cure, they're back for #IceBucketChallenge2026! They're challenging @quigley.house.gov, Team Gleason, Sen. Lisa Murkowski, and the I AM ALS community. Help reauthorize ACT for ALS. bit.ly/fundALS

121

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 15/09/2025

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

11912

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 20/07/2026

ALS prevalence is expected to rise by more than 10% by 2030. More people will need access to promising therapies. That's why ACT for ALS must move forward. ALS doesn't wait. Neither can we. Ask your representative to cosponsor ACT for ALS: bit.ly/fundALS

041

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 16/07/2026

Thanks to your hard work and advocacy, we're closer than ever to reauthorizing ACT for ALS and protecting federal funding for ALS research and access to promising therapies. The House is likely to vote on ACT for ALS next week. Ask your Representative to vote YES: bit.ly/fundALS

131

Reposted by Matt Rocheleau

iamals.bsky.social @iamals.bsky.social · 15/07/2026

Thank you @TeamGleason and @SteveGleason for all your support in driving progress towards passing ACT for ALS. Let's keep this momentum going. Ask your Representatives to VOTE YES on ACT for ALS: bit.ly/fundALS

011

Reposted by Matt Rocheleau

Chris Fusco @fuscochris.bsky.social · 18/07/2026

Challenge accepted @mrochele.bsky.social. Tagging in @danwetzel.bsky.social and Erik Kantz to keep this train moving. Donate at the link in the comments.

211

Matt Rocheleau @mrochele.bsky.social · 18/07/2026

011

Reposted by Matt Rocheleau

Emily Sweeney @emilysweeney22.bsky.social · 16/07/2026

Challenge accepted! 🙌

041

Matt Rocheleau @mrochele.bsky.social · 15/07/2026

I'm living w. #ALS I'm taking the #CJ2KIceBucketChallenge Share, donate fundraise.massgeneralbrigham.org/chrisjohnson28 & push for funding www.iamals.org/progress I challenge @emilysweeney22.bsky.social @mrballen.bsky.social @fuscochris.bsky.social & RunLIC #ALSAwareness #EndALS @iamals.bsky.social

194

Reposted by Matt Rocheleau

Chris Fusco @fuscochris.bsky.social · 14/07/2026

My latest post aiming to raise money and awareness for ALS reaearch focuses on @mrochele.bsky.social. Read all about Matt here: www.facebook.com/100008985881...

facebook.com

022