Sydney Towle, TikTok creator who documented rare cancer journey, dies at 26
Key keywords: Sydney Towle, TikTok rare cancer creator, myxoid liposarcoma, young adult cancer advocacy, terminal cancer journey, social media health influencer, rare cancer awareness, palliative care content
Sydney Towle, the beloved 26-year-old TikTok creator who shared every step of her 4-year battle with rare myxoid liposarcoma with her 1.2 million followers, has passed away, her family confirmed in a statement posted to her social media accounts on Monday.
Towle first received her cancer diagnosis in 2020, when a routine checkup for persistent back pain revealed the rare soft tissue cancer that would go on to spread through her abdomen and lungs over the following years. Rather than keeping her journey private, she launched her TikTok channel shortly after her first round of chemotherapy, posting raw, unfiltered clips of her treatment side effects, her hair loss, her struggles with chronic pain, and the small, joyful moments she prioritized amid her illness: beach trips with her closest friends, movie nights with her family, and taste tests of her favorite snacks when she had the energy to eat.
Unlike many social media creators who frame health journeys as linear “success stories,” Towle was open about the setbacks she faced, including failed clinical trials, extended hospital stays, and the news she received in August 2024 that her cancer was no longer responding to treatment, and she would be entering palliative care. Her final video, posted two weeks before her death, showed her sitting on her porch with her rescue dog, thanking her followers for their years of support and urging them to donate to the Rare Cancer Research Foundation, a cause she raised over $270,000 for during her time on the platform.
Her family’s statement noted that Towle passed away peacefully at her home in Maine, surrounded by her parents, her two siblings, and her long-term partner. “Sydney’s only goal when she started posting was to make sure other people facing rare, scary diagnoses didn’t feel as alone as she did when she first got her news,” the statement read. “She was so proud of the community she built, and we want to thank every single person who reached out to her, shared her content, or donated to the causes she cared about over the years. She will be more deeply missed than we can ever put into words.”
Tributes have poured in from across social media in the days following the announcement, with fellow creators, cancer survivors, and medical professionals praising Towle for her honesty, her warmth, and her unwavering commitment to raising awareness for underfunded rare cancer research. The Rare Cancer Research Foundation released a separate statement on Monday saying that Towle’s advocacy had directly led to a 35% increase in public donations to their myxoid liposarcoma research program since she began partnering with them in 2022, and that the organization would name a new research grant in her honor later this year.
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I’ve followed Sydney for 3 years, and her videos got me through my own breast chemo journey. She never sugarcoated how hard cancer was, but always reminded us to find joy in the smallest things, even on the worst days. Rest in peace angel, you changed so many lives more than you ever knew.
As a young adult oncology nurse, I often share Sydney’s content with my patients who feel so isolated in their diagnosis, especially those with rare cancers that no one they know has ever heard of. She broke the stigma around talking about terminal illness openly, and her work has already helped so many people feel seen. The rare cancer community lost an incredible advocate today.
I got to collab with Sydney last year on a cancer awareness fundraiser, and she was the kindest, most passionate person I’ve ever met. She didn’t care about views or sponsorships or fame, she just wanted to make sure no one else had to go through what she did feeling completely alone. Her legacy will live on in all the lives she touched.
I was diagnosed with the exact same myxoid liposarcoma last year, and Sydney’s videos were the first thing I found when I googled my diagnosis in the hospital. She made me feel like I wasn’t broken for being angry, or sad, or scared about what was ahead. I don’t know how I would have gotten through my first six months of chemo without her. Thank you for everything, Sydney.