At a Glance
- Sara Bennett was a content creator who passed away at 39 after a nearly three-year battle with ALS.
- She shared her journey on Instagram, leaving a post-humous message and a legacy plan for her sons, Lincoln (9) and William (7).
- Her husband Rusty revealed the early signs, the year-long diagnosis process, and how they turned her story into advocacy.
In a brief statement posted on her Instagram account on January 13, Sara Bennett announced her death, sharing a smiling photo and a caption that reflected on her life and the strength she found in her final months.
Early Life and Family
Sara Bennett married Rusty Bennett in 2014, three years after meeting and two years before welcoming their first child. The couple built a life together, raising two sons while she worked as a teacher until her diagnosis. Their family life was marked by routine schoolwork, community events, and the quiet support that would later become the foundation of her advocacy.
Onset of Symptoms
The first signs appeared in March 2022, when Sara noticed numbness in her right hand while grading students’ tests. She asked Rusty to watch as she struggled to clip a stack of papers. “I was, ‘Here,’ and I clipped it together for her, and that was it. She just went about her day, grading some things,” he recalled, describing the moment when her dominant hand failed.
A week later, she visited a doctor because the numbness did not improve. Initially, they suspected a pinched nerve or inflammation from sleeping on her arm. However, a medical professional suggested a more serious possibility: an issue rooted in her brain or spine.
Diagnosis Journey
What followed was a year of tests and procedures. Rusty described the experience as “a miserable journey” and noted that ALS “is disqualifying 1,000 things.” The team ruled out multiple sclerosis and cancer, and eventually confirmed ALS. Doctors projected a life expectancy of 2 to 5 years-a figure that shocked the family, who had little prior knowledge of the disease.
“I didn’t even know technically what it did other than I knew it killed Lou Gehrig really fast,” Rusty said, recalling his limited understanding before the diagnosis. He added, “That’s when the – pardon my French – ‘Oh, sh—‘ started,” reflecting the emotional toll of learning the truth.
Advocacy and Legacy
After her diagnosis, Sara shifted her online presence. She began posting in 2020 to promote her professional organization, the Ananda Edit. Following her diagnosis, she changed her username to @TheAnandaPivot, opening conversations about ALS and neurodegenerative disease. Her Instagram became a platform for education, support, and personal reflection.
In the months before her passing, the couple decided to publicize a link for donations to their sons’ 529 college savings plans. Rusty explained that the plan was a priority “since the beginning of 2025, we didn’t expect her to make it past autumn.” The donation codes were L4R-R63 for Lincoln and T46-E6P for William, accessible through a post shared on Sara’s page after her death.
Family’s Response and Legacy Plans
Rusty took a leave from his consulting job in spring 2025 to care for Sara full-time. He described the conversation about her prognosis as “the worst conversation I’ve had to have my entire life.” Despite the grief, the family celebrated Thanksgiving and the holidays together, with Sara present at Rusty’s 43rd birthday on December 31. “It was awesome. We got to watch the ball drop,” he recalled, noting that Sara stayed in the bedroom but still joined the celebration.
The family’s decision to share the 529 plans publicly was a testament to their commitment to ensuring the boys’ future. “As she got sicker, we were just like, ‘Yeah, let’s kick that out there,” Rusty said, highlighting the proactive approach they took even in the face of a terminal illness.
Key Takeaways
| Point | Detail |
|---|---|
| Early Signs | Right-hand numbness during grading in March 2022 |
| Diagnosis | Year-long testing; ALS confirmed; life expectancy 2-5 years |
| Advocacy | Shifted Instagram to @TheAnandaPivot; shared educational content |
| Legacy | Public donation links for sons’ 529 plans (L4R-R63, T46-E6P) |
| Family Support | Rusty became full-time caregiver; celebrated holidays together |
Sara Bennett’s story underscores the unpredictable nature of ALS and the importance of early recognition, community support, and advocacy. Her legacy lives on through the continued efforts of her family and the online community she helped build.
