Brooke and Erin have a disease that causes paralysis in their muscles. Slowly, relatively speaking, they will lose their ability to walk, talk, eat, move, and breathe independently.

Except for their eyelids. That’s the one thing their disease doesn’t rob them of. Blinking. They can blink till the cows come home.

When Brooke and Erin’s friends were saying yes to dresses, babies and promotions, they were saying yes to neuro appointments, mobility aids and elevators as opposed to escalators.

When Brooke and Erin should have been shopping for purple stilettos and the latest and greatest in hiking boots, they found themselves looking for sensible shoes and orthotics.

When their peers were moving forward ~ they were moving home. In typical Brooke fashion, she summed up moving back home saying “It was a culture shock with a side of mom having mom ask every 12 minutes are you hungry?”

No need for long term romantic commitments or moonlit walks on the beach. Instead you tell your suiters you had a life but now you’re back home residing in your childhood bedroom.

Brooke Eby was 29 when she began feeling tightness in her calf and was walking with a slight limp, no big deal just annoying. However, a casual mention of this to her doctor~sister turned into a four year odyssey of testing and evaluations.

Brooke Eby

Brooke was living in New York City working as a business development manager when she was diagnosed in 2022, at age 33, with Amyotrophic Lateral Sclerosis.

Statistically ALS shows up much later in life, the average age being 55-65 and it’s twenty percent more common in men than women.

Erin Taylor

Erin Taylor was 22 when she started noticing weakness in her hands, changes in her speech and body stiffness. Nothing life changing, she would just have to get back into a better workout routine. Her mother thought otherwise.

One year later, in 2023, having graduated college with a degree in Botany Sciences, Erin was working as a field technician in Nevada when she was diagnosed with ALS at the age of 23.

Getting diagnosed with ALS at 23 and 33 isn’t just rare, it’s crazy bizarre ~ not even on my radar ~ rare.

Naturally Brooke and Erin’s social circles didn’t include terminal illness, so guess what? These two standout young voices lit up social media by documenting their experiences with ALS in real time on Tik Tok and Instagram; through candid, humorous content advocating the need for ALS awareness, funding, community and a cure.

Brooke and Erin are ~ social media influencers ~ of the best kind, proving vulnerability is the most powerful kind of influence. An influencer is like being everyone’s bestie and a modern day infomercial at the same time.

Being an ~ influencer with ALS ~ is a very niche job, a job you didn’t exactly apply for, but here you are making people laugh and making the unbearable bearable.

And they are keeping ALS in the conversation, which is key for awareness, diagnosis, funding and research. The public has short memories so ya, ALS needs to still make headlines.

In 2023, Brooke Eby founded ALStogether, a slack~based community designed to connect people with ALS and their caregivers, facilitating resources and support.

Slack is a group messaging app organized by topic (#newly-diagnosed, #caregivers, #random-funny-things) so people can  jump into specific conversations that fit where they are.

In February, ALStogether became part of ALS Network, instantly broadening its reach, resources, and visibility. And in March, ALS Network awarded Brooke Advocate of the Year in recognition of raising over $1 million for research, candid social media storytelling, speaking engagements and founding ALStogether.

The Scott-Morgan Foundation began collaborating with Erin Taylor soon after her diagnosis (late 2023), and by January 2024 she was already central to their projects. Erin has been a real time case study ~ and ~ co-creator of the assistive technology they’re building including her AI avatar.

Erin’s path has been innovation~first. How can tech help me live, communicate and move? She uses her AI voice (recreated digital voice) to continue speaking publicly.

Erin is primarily recognized as a young ALS advocate who uses her social media platforms to shatter misconceptions like ALS only happens to older people. Through unfiltered videos of her daily life, messy moments and all ~ she educates viewers while using dark humor to make us laugh.

Brooke stayed in her corporate job initially and her path was story~first.  Let me bring people into this experience in real time. She’s known for her sharp, dark humor and her content mixes everyday life with ALS and advocacy.

Brooke blew up on social media with humor and honesty. She’s a connector, building community and visibility through relatability. Erin entered the spotlight through groundbreaking technology and has become the face of futuristic ALS care.

Together Brooke and Erin are continuing to help shift ALS from quiet and clinical to visible, human, innovative and even funny at times.  They have transformed their personal experience with ALS into purpose ~ helping reshape how the world understands ALS when it hits the young and their future.

Currently both women are in advanced stages of ALS, fully wheelchair dependent and needing continuous respiratory support. Erin has lost almost all of her ability to speak while Brooke uses voice to text plus eye gaze technology as her hand and voice functions decline. Yet neither one are slowing down.

Brooke Eby (Tik Tok/Instagram: @limpbroozkit) and Erin Taylor (Tik Tok/Instagram: @unsteadyandready) are still actively advocating for a cure. Both appeared on one of my favorite podcasts: I’m Dying to Tell You and no it’s not a doom and gloom kind of podcast but rather an upbeat show hosted by Lorri Carey who has had ALS for over 20 years. The show focuses on people facing serious challenges emphasizing resilience, hope, love and humor.

You don’t have to have ALS or a serious illness to be inspired by I’m Dying to Tell You podcasts, if anything it gives you pause to appreciate your health, mobility and daily freedoms we all take for granted. Lori Carey’s podcast is designed to remind us when life is hard, there’s still strength, smiles and reasons to show up.

Brooke appeared in season 4, episode 75 titled “Fighting ALS with Humor” released March 28, 2023. Erin appeared in the brand-new Episode 120: “Erin Taylor and Her Mom Lily on Living Fully with ALS”, released on April 21, 2026.

Brooke is navigating her progression using current tools while Erin is co-creating the future of assistive technology in real time.

Erin uses a hyper~realistic AI avatar that looks like her, sounds like her, and speaks in real time preserving her personality, facial expressions, even her humor. And I’m over here still marveling at the invention of the telegraph.

Here’s the twist ~ the real surprise for me wasn’t just their diagnosis of ALS and its progression, it was also the lack of panic at the beginning because of their ages. The brain didn’t sound any alarms, it just kinda shrugged like “I must be tired…I slept funny…I need to workout more.”

That seemed so counterintuitive until I learned the brain isn’t designed to panic at every change ~ it’s designed to protect us from it. Gradual changes don’t feel dramatic, so your brain normalizes them.

And that’s exactly the way my brain worked when I first started having symptoms. You can read my story here.

For someone as young as Brooke and Erin, a diagnosis like this didn’t just feel unlikely ~ it didn’t fit the narrative at all.

Both are young, talented, extremely funny and living lives their peers can’t even begin to comprehend.

There but for the grace of God go I.

We need a cure.