An influencer has tragically announced her own death on social media after being diagnosed with a terminal neurodegenerative disease.
Creator Sara Bennett built a platform on Instagram for her business, however, she pivoted to sharing health content and updates about her life as a parent after being diagnosed with Amyotrophic Lateral Sclerosis (ALS) in March 2023.
The 39-year-old would regularly share updates about living with the condition, including reflections on life and grief as the disease progressed.
However, six days ago a post written by Bennett was shared on the account confirming that she'd passed away.
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"I am not in pain, or tired. I can laugh, talk, and I can move," the post confirming her passing began.
Bennett went on to express that she was grateful for the past couple of months, adding: "Reflecting in my last few months of my life, I am glad I didn’t go suddenly even WITH the suffering. I finished my list.
"Even if you don’t believe in anything, I am feeding the earth, and my tree. I loved this life, and am grateful for the time."
What is ALS?
ALS is one of four types of motor neurone disease (MND),an incurable neurodegenerative condition which causes progressive muscle weakness in the body, according to the NHS.
Early symptoms of ALS include weakness in the arms and legs, causing people to drop things.
As the disease progresses patients will rely on the use of a wheelchair as mobility reduces, while the latter stages of the disease will see difficulties with swallowing, breathing and partial paralysis.
There is no known cure for the condition, with ALS Association stating that patients live for an average of three years after diagnosis.
Bennett was lived for just under three years after being diagnosed, with recent social media updates detailing how she was preparing herself for 'the after'.
In a post dated to August 2025, Bennett revealed that she and her family had 'dry run' of her end of life ceremony, a day which she 'ugly cried' through.
"I did a dry run of my End Of Life Ceremony this month," she wrote.
"I ugly cried the whole time, but It was also beautiful. I get to know exactly what my loved ones will hear that day. As a Type A, who could ask for more? It’s comforting.
"The idea of a traditional funeral just doesn’t feel 'like me'. I know it is sad, I am not trying to make it easier. I just want to reframe it, and I won’t let fear or discomfort keep me from the chance to do this."
In the final post shared to her blog, Her ALS Story, Bennett reflected on her diagnosis and called for further research into potential treatments for ALS.
"When it comes to the story of who I was in this life, I am more than the end of it. Thirty-six of my 39 years I just really loved the shit out of my life and who I was. Three and a half years after my first symptoms, I just feel diluted. ALS took my independence, my voice, and my life," she wrote.
"I hope whoever reads this is angry enough to take action. I hope you're so pissed that you push for treatments and never let up... It's on you to push even harder for ALS to become survivable."
Brenna Cooper