Remembering Brooke Eby: A Friend Who Taught Us to Laugh, Connect, and Live Fully

A personal remembrance of a friend, advocate, fundraiser, community builder, and unforgettable force for the ALS community.

There are some people you meet who are simply impossible not to like.

The first time I interviewed Brooke Eby for the MDA Quest Podcast in 2023, I actually told her that. I had seen her on the Today show and there was just something about her. She was funny and warm and completely herself. I told her, “You kind of can’t help but like Brooke.” After I saw her interview, I immediately “Slid into her DM’s” inviting her to be my guest on the podcast, never expecting to hear back. Much to my surprise, I received a reply within about 30 minutes, accepting my invitation.

I had no idea then how much I would come to treasure knowing her.

Brooke passed away on October 1 at the age of 37 after living with amyotrophic lateral sclerosis (ALS). And while I know there will be many beautiful and well-deserved tributes written about Brooke the advocate, Brooke the social media phenomenon, and Brooke the extraordinary voice for the ALS community, I keep coming back to Brooke, my friend.

She was our friend. She made everyone she ever met feel like her immediate best friend. And I am heartbroken that she is gone.

Brooke was diagnosed with ALS in March 2022 at just 33 years old, after four years of unexplained symptoms. She didn’t fit the image many people had in their minds of someone with ALS, and she knew it. So, she decided to do something about it.

She got loud – in the most lovable way.

Living in “Funny Land”

Brooke began sharing her life with ALS publicly, with an honesty and sense of humor that were entirely her own. She talked about the frightening things, the frustrating things, the absurd things, and the things nobody tells you about until you’re living them. She allowed hundreds of thousands of people into some of the most personal parts of her life, not because it was easy, but because she understood what that visibility could do.

It could teach people.

It could make someone newly diagnosed feel less alone.

And, because this was Brooke, it could also make people laugh.

Humor wasn’t something Brooke manufactured for social media. It was genuinely how she moved through the world. When we talked on the podcast about how she managed the difficult moments, she told me she didn’t want to “live in deep.” She wanted to “live in funny land.” She was wonderfully irreverent, and ALS didn’t get to take that away from her.

But there was tremendous substance underneath all that humor.

During that first conversation, Brooke and I talked about something I called a “joy muscle” — the idea that perhaps joy, like a muscle, could be strengthened through use. Brooke loved the irony of talking about building a joy muscle while living with a disease that causes muscles to atrophy.

That conversation has stayed with me.

Brooke believed deeply in purpose. She once told me that she felt as though her whole life had been training her for the years she would spend advocating for ALS. And when I asked what she would tell someone facing a new diagnosis or another life-altering challenge, her advice began with community. Find people who understand. Let yourself grieve. And then, when you’re ready, figure out what your particular gifts allow you to do.

Brooke followed her own advice.

Creating the Community She Needed

She founded ALStogether, creating an online community where people living with ALS and caregivers could find one another, ask the questions that are difficult to ask anywhere else, exchange information, vent, laugh, and simply be understood. She knew firsthand the relief of being in a room — even a virtual one — where you don’t have to explain everything first.

That belief in connection is one of the reasons Brooke fit so naturally into the MDA family.

A Friend to MDA

MDA had the privilege of recognizing Brooke’s extraordinary advocacy through Wings Over Wall Street, our longstanding event dedicated to raising funds for ALS research. Brooke was selected to receive the Wings Over Wall Street Spirit Award, an honor recognizing extraordinary commitment to ending ALS through awareness, advocacy, fundraising, and support for research.

Warren Schiffer, co-founder of Wings Over Wall Street, said at the time that choosing Brooke was easy. He had been struck by her authenticity, charm, humor, and willingness to talk about both the deadly serious and the wonderfully mundane realities of ALS.

In characteristic Brooke fashion, though, she responded to the honor by turning the attention toward everyone else fighting the disease: “Anyone fighting to end ALS is award-worthy in my book.”

That was Brooke.

In 2024, I sat beside her in real life for the last time after she shouted my name from across the room to the back of my head before a NeuroMuscular Advocacy Collaborative (NMAC) meeting full of patient advocates at MDA’s Clinical & Scientific Conference. She quietly whispered astute observations, and a few well-timed jokes, to me throughout the meeting.

And we were honored to have her deliver the keynote address at that same MDA Clinical & Scientific Conference, speaking to more than 2,000 members of the neuromuscular disease research and clinical community from around the world.

She spoke before some of the most accomplished scientists and clinicians in our field and reminded them why their work mattered.

“I am your ultimate stakeholder,” she told them. “I am the person living with the disease that you’re trying to end.”

And then Brooke gave them a challenge that feels especially poignant now.

“I live at the speed of ALS,” she said. “Therefore, you need to operate at the speed of ALS.”

The Urgency Remains

That urgency matters today every bit as much as it did when Brooke appeared on that stage.

Because ALS is still taking people we love.

It has taken Brooke.

And I hate that.

I also know that Brooke is not the first person ALS has taken, and she will not be the first person many reading this have grieved. Across the ALS and broader neuromuscular disease communities, far too many families and friends know what it is to lose someone they love to these diseases. If Brooke’s death is stirring up the memory of someone you have lost, I hope you know that we are remembering them, too. Their lives mattered. Their stories matter. And they are part of why the work Brooke fought so hard to advance remains so urgent.

So Much More Than an Advocate

There is a temptation when someone remarkable dies to tidy their life into a collection of accomplishments. Brooke certainly leaves plenty of them. She reached millions of people. She raised awareness and funds. She helped change perceptions of ALS. She created community. She stood on stages and challenged scientists, researchers, companies, policymakers, and all of us to do more.

But Brooke’s life was bigger than her ALS advocacy.

She was a daughter, sister, aunt, colleague, and friend. She was an advocate, a fundraiser, an influencer, a community builder, and quite possibly one of the funniest people you could know. She had people she had loved since childhood. She loved silly television shows and Thin Mints. She could make mobility aids funny. She had approximately 87 people she referred to as her “best friend,” something I teased her about during our podcast conversation. She loved fiercely and was fiercely loved.

ALS changed what Brooke’s body could do. It never erased the person inside it.

Maybe that is one of the greatest gifts she gave all of us.

She showed the world that a person living with a devastating disease is still a whole person. Still funny. Still ambitious. Still annoyed. Still ridiculous. Still interested in other people. Still capable of contributing. Still deserving of joy. Still living. Still had the best head of hair I have ever seen in real life.

And she showed people facing ALS that they didn’t have to do it alone.

The Impact She Leaves Behind

At the end of our podcast interview, I told Brooke how proud I was to know her. I thanked her for using her voice, for sharing her story, and for “showing us all how to laugh.”

I am so grateful I got the chance to tell her that while she was here.

Today, I’m even more proud to have known her.

To Brooke’s family, her enormous circle of friends, the ALStogether community, and everyone who loved her, all of us at MDA are holding you close.

And to Brooke: Thank you for trusting us with your story. Thank you for pushing us. Thank you for making us laugh. Thank you for reminding us that community matters, that purpose matters, and that there is room for joy even alongside things that are unimaginably hard.

Most of all, thank you for being our friend.

You once said that there is a role for everyone. Looking back now, I don’t think yours could ever have been summed up in a single word. Advocate doesn’t cover it. Neither does fundraiser, influencer, comedian, community builder, or friend.

You were all of those things and so much more.

And somehow, all of those roles added up to something much bigger: impact.

You made people laugh. You made people feel understood. You made people care. You made people act. And you made an extraordinary number of people feel lucky to know you — even those who only knew you through a screen.

That was your impact, Brooke.

And it will live on in all of us.