When Sara Bennett first noticed she couldn't quite squeeze a binder clip at work, she figured it was just a pinched nerve. Maybe she’d slept on her arm funny. She was a 36-year-old high school social studies teacher in Ohio, a mom to two young boys, and a professional organizer who spent her weekends helping people declutter their lives. She was busy. She was "in motion."
But that tiny, annoying weakness in her right hand didn't go away. Instead, it started to crawl. Soon, she was tripping over her own flip-flops. Her balance felt off. The "working mom fatigue" she’d felt for years was suddenly replaced by a bone-deep exhaustion that felt like her body might just collapse under its own weight.
After a year of specialists, lumbar punctures, and even a spinal surgery that didn't help, the hammer finally dropped in March 2023. Sara Bennett had ALS. Honestly, most people would have just disappeared into the private grief of a terminal diagnosis. Sara did the opposite. She "pivoted." She took her Instagram account, originally dedicated to home organization, and turned it into a masterclass on how to die with your eyes wide open.
The Ananda Pivot: When Organizing Becomes Advocacy
Sara’s original brand was The Ananda Edit. The name was a nod to the Sanskrit word for "bliss." It was all about stripping away the physical junk to find more joy. After the diagnosis, she renamed it The Ananda Pivot. It’s such a simple, gutsy move. It was her way of saying, "The plan changed, but I’m still the one driving."
She didn't just post "awareness" infographics. She showed the gritty, annoying, and heartbreaking reality of Sara Bennett ALS journey. She posted about:
- Using adaptive tools like special spoons or button hooks when her hands stopped working.
- The "dry run" she did for her own end-of-life ceremony in August 2025.
- The grueling process of raising $50,000 for a customized side-loading van so she could still go to her sons' soccer games.
She was incredibly candid about the medical system, too. She once mentioned that while many neurologists had "a lot of brain," they often lacked "heart." It was that kind of blunt honesty that brought over 100,000 people to her page. She wasn't an "ALS patient" to them; she was a friend they were losing in real-time.
Parenting Through the Unthinkable
How do you tell a six-year-old and an eight-year-old that their mom is dying? Sara and her husband, Rusty, didn't hide it. They used books. They used simple language: "Mom's brain is struggling to talk to her nerves."
She spent over 100 hours creating a scrapbook for her sons, Lincoln and William. It wasn't just photos. It was 100 pages of "Advice and Love Letters." She wrote about how to handle mean kids at school and why it’s important to be kind to yourself. She called it the most important work of her life.
What Sara Bennett Got Right About ALS Awareness
There’s a lot of noise in the health advocacy space. Sara cut through it because she refused to be a tragedy. She was still a teacher at her core. She mentored students at Teays Valley High School even while she was losing her voice.
She also became a fierce advocate for clinical trials and "Hail Mary" treatments. She worked with organizations like I AM ALS and Live Like Lou, pushing for better access to adaptive tech. She hated that insurance rarely covered the things that actually gave her independence back, like the van or specific mobility aids.
The Final Post: "I Finished My List"
On January 13, 2026, a post appeared on Sara’s Instagram that she had written in advance. It was the announcement of her death at age 39. It wasn't a "goodbye" so much as a status report from the other side.
"I am not in pain, or tired. I can laugh, talk, and I can move... I finished my list."
She mentioned she was glad she didn't "go suddenly," despite the suffering. That’s a perspective you don't hear often. She felt the slow progression of ALS gave her the time to say everything that needed saying. She spent her last months making sure her family was taken care of, setting up college funds for her boys, and ensuring her legacy of "being the good" lived on through her family’s nonprofit, 33 Forever.
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Lessons from the Journey
If you’re following the Sara Bennett ALS story, there are a few things we can actually do besides just feeling sad. Sara was all about "purposeful pain."
- Listen to your body, but fight for answers. It took Sara over a year and 15 different physicians to get a correct diagnosis. If you feel something is wrong, don't let a "pinched nerve" explanation stop you from seeking a second or third opinion.
- Support adaptive technology funds. Most families can't afford a $50k van or a $20k wheelchair. Organizations like the ALS Association and local nonprofits provide grants for these items. That’s where the money is needed most for daily quality of life.
- Normalize the "End of Life" conversation. Sara worked with a death doula and planned her own "dry run" ceremony. It sounds morbid to some, but for her, it was about taking the fear out of the inevitable and giving her family a map to follow.
- Invest in research. Sara's sons held lemonade stands for the ALS Therapy Development Institute (ALS TDI). We are still in a place where "sporadic" ALS (which Sara had) has no cure.
Sara Bennett didn't just live with ALS; she used it as a megaphone. She showed that even when your body is failing, your voice—whether it's through a screen, a scrapbook, or a pre-written post—can still change the world.
To honor her legacy, consider contributing to the college funds for her sons, Lincoln and William, or donating to 33 Forever, the nonprofit her family runs to support mental health and ALS awareness. Be kind, stay curious, and like Sara said: "Love the s--t out of your life."