Patients Launch First-Ever Solitary Fibrous Tumor Foundation to Tackle Critical Gaps in Rare Cancer Care
Debuting during Sarcoma Awareness Month, the new nonprofit aims to eliminate patient isolation, drive research, and build global resources for a disease with zero FDA-approved treatments.
[CHICAGO / IL] — July 26, 2026 — The Solitary Fibrous Tumor Foundation (SFTF) today announced its launch as the first patient- and supporter-led nonprofit organization dedicated entirely to Solitary Fibrous Tumor (SFT), an ultra-rare sarcoma. The announcement comes during Sarcoma Awareness Month, observed globally each July.
SFT is diagnosed in fewer than one in one million people worldwide, with an estimated 300 to 400 new cases in the United States each year. The disease is notoriously unpredictable; between 10% and 30% of patients experience a recurrence or metastasis—often 10, 20, or even 30 years after initial tumor removal—leaving patients in a lifelong state of surveillance.
Until now, no dedicated foundation has existed to serve this community. SFTF was formed after five SFT patients met in person for the first time at the SARC and ASCO conferences in Chicago in May 2026.
“When I was diagnosed with SFT in 2006, and again in 2021, I quickly realized there was no guide, no community, and no organization fighting specifically for us,” said Steve McBee, founder of SFTF and an SFT patient for two decades. “This spring in Chicago, five of us recognized that SFT patients needed a stronger, more organized voice—and that we were ready to build it.”
Founded by McBee and Dina Rollman, the foundation is guided by a founding board of dedicated patient advocates including Steve Ducos, Marvin Schuldiner, Bethany Lucas, Sydney Zacher, and Joe Zacher. SFTF's work centers on three gaps identified directly by patients: isolation, knowledge, and research funding.
The foundation:
- Publishes a plain-language patient guide at curesft.org/patient-guide covering diagnosis, risk assessment, treatment pathways, and long-term surveillance.
- Refers newly diagnosed patients to the Horowitz Solitary Fibrous Tumor Initiative (HSFTI) at the University of Miami's Sylvester Comprehensive Cancer Center.
- Builds peer connection among a geographically scattered patient population.
- Advocates on insurance access, clinical trial awareness, and long-term care policy specific to ultra-rare cancer patients.
The Solitary Fibrous Tumor Foundation is a 501(c)(3) non-profit organization (EIN 42-3546399) registered in Illinois, incorporated June 26, 2026. Patients, caregivers, and allies looking to volunteer, collaborate, or donate can find more information at curesft.org.