Rob's Renegades- ALS Greater NY Chapter

10/18/2026

It was a beautiful day for the Walk ALS - ALS United Greater New York at the Walkway Over the Hudson State Historic Park . Definitely warmer than expected. 😁 (We had so many layers on 😅) Thank you to everyone for supporting Rob's Renegades and all the organizers and volunteers for this walk. We'll see ya next year!! 🫶🥰

10/17/2026

Tomorrow!! Come join Rob's Renegades- ALS Greater NY Chapter at the Walkway Over the Hudson State Historic Park for Walk ALS - ALS United Greater New York 🫶

10/16/2026

Just $50 short of my goal!! The Walk to Defeat ALS is on Sunday!! Please donate!!

Never take your health for granted, and have compassion for those who are fighting battles they never asked for...Be grateful for your independence, for the ability to do the simplest things. Not everyone gets to keep those gifts. We ❤️ you, Rob, always.

DONATE!! ⬇️

http://secure.als-ny.org/goto/Robs_Renegades_

10/02/2026

I followed her journey. She was an amazing, hilarious, driven person. Rest in peace, Brooke.

The Walk ALS - ALS United Greater New York is so important. Please donate.

http://secure.als-ny.org/goto/Robs_Renegades_

We are heartbroken by the passing of Brooke Eby, ALS advocate, storyteller, founder of ALStogether, community builder, and our dear friend.

Brooke changed how people understood ALS. With extraordinary honesty, irreverent humor, and vulnerability, she invited millions into her life and helped people see the person beyond the diagnosis. She made people think. She made people care. And, even during unimaginably difficult moments, she made people laugh.

She founded ALStogether so people living with ALS and caregivers could find one another, share what they were experiencing and connect with people who understood. Earlier this year, Brooke entrusted that Slack community to the ALS Network, and we made a promise to carry her vision forward.

In June, we had the privilege of honoring Brooke as our 2026 Dean and Kathleen Rasmussen Advocate of the Year. When she received the honor, Brooke told us: “I didn’t choose ALS, but I did choose to get loud, and be irreverent about it, so don’t worry, I’m not getting quiet anytime soon!”

She was right. Brooke’s voice lives on in every person she inspired, every perception she changed, and every connection made through the community she built.

Our hearts are with Brooke’s family, friends, loved ones and the entire ALStogether community. We will miss her beyond measure. Thank you, Brooke, for trusting us with what you built. We will carry it forward.

Read our full statement on our website: https://alsnetwork.org/remembering-brooke-eby/

09/30/2026

I raised my goal. Tomorrow is October. The Walk to Defeat ALS is 19 days away. Asking for money isn't a fun thing to do, but in this case, it is absolutely necessary. ALS is a horrific disease and we need to find a cure. Rob passed away less than 3 months after his diagnosis. We were together for 16 years and so very quickly, ALS took him from us. If you can spare $5 even, please do. Simply, if everyone I knew gave $5-$10, my goals would be reached much quicker. Yet, it seems it is the same few people that pitch in just to help me reach my goal each year. I appreciate them so much ❤️ but it would be lovely to get some new donors. It's a scary disease because 95% of this disease is sporadic, meaning it comes out of nowhere, to random people, and it's a death sentence. I dream to witness a cure or even a life extending treatment. Please donate today. 🫶

Thank you in advance to my friends and former colleagues that support me in this cause.

http://secure.als-ny.org/goto/Robs_Renegades_

09/29/2026

This is good news but it is still critical to donate.

We need to find a cure and also provide assistance to those living with ALS currently.

http://secure.als-ny.org/goto/Robs_Renegades_

🎉 BREAKING NEWS! 🎉

We did it! The ACT for ALS reauthorization was passed by Congress today. The reauthorization extends the research and treatment access programs established by the original ACT for ALS through 2031, keeping the momentum moving toward a cure.

This victory belongs to the entire ALS community.

We mobilized advocates across all 50 states and worked directly with partners on both sides of the aisle to shape and strengthen the bill, grounding it in what people living with ALS and families tell us every day: move faster, cut the barriers, and generate evidence that turns promising science into proven treatments.

To every advocate who walked into a congressional office and wouldn't leave without a commitment: you did this. To the families who shared their hardest moments, so other families might have more time: you did this. We're grateful to our champions on both sides of the aisle who helped make this legislation possible.

Thank you for being a part of the ALS community and helping make history.

09/21/2026

Less than a month away and we have not hit our goal. 😔 Please donate now and keep Rob in your memory and heart. While we can wish and pray for a cure, we can also actively help by giving what we can to this cause. It funds research and supplies patients and families with much needed equipment and services.

http://secure.als-ny.org/goto/Robs_Renegades_

09/11/2026

🇺🇲🗽❤️🤍💙🗽🇺🇲

NEVER FORGET

09/11/2026

September 11 hits differently when you’ve known profound loss.

25 years can pass, but love doesn’t. Neither does grief.

Grief doesn’t mean you haven’t moved on.

It means you loved someone you never wanted to live without.

Time doesn’t make you love them less. It just teaches you how to live with missing them.

Today we honor the memory of the 2,977 lives lost, including the brave men and women who ran toward danger without hesitation. ♥️ 🇺🇲

02/20/2026

It’s not just the loss that is heartbreaking— it begins the instant they get the diagnosis. Seeing them fade, losing their abilities and everything that is familiar, it shatters you. 😥 Rest in peace. We need a cure. Donate if you can, please.