Isolation
Patients may never meet another person living with SFT. We create community and meaningful peer connections.
Solitary Fibrous Tumor Foundation
Found, heard, counted, and included.
We are building the trusted resources, research connections, and organized voice that people living with Solitary Fibrous Tumor deserve.
Why SFTF
A small community ready to move forward.
Solitary Fibrous Tumor is an ultra-rare sarcoma. Patients are scattered across cancer centers, countries, and online groups—often without disease-specific guidance or a clear path to expert care.
There is no shortage of caring, engaged people in this community. What we need is a stronger way to bring everyone together. That's what SFTF is building.
<1 in 1M
estimated annual incidence
NAB2–STAT6
defining gene fusion
Long-term
surveillance matters
New patient resource
A clearer way to understand SFT
Learn the basics, prepare for diagnosis conversations, understand risk, explore treatment pathways, and plan for long-term monitoring.
What you’ll find
- 01What SFT is and why Hemangiopericytoma is an older name
- 02How biopsy and nuclear STAT6 testing confirm diagnosis
- 03How Demicco risk scoring and WHO grading guide care
- 04When surgery, radiation, or systemic treatments may be used
- 05Why long-term scans and support for scanxiety matter
Why we formed SFTF
Closing the gaps that leave people behind.
SFTF was formed so no one affected by Solitary Fibrous Tumor has to navigate an ultra-rare cancer alone or without reliable guidance.
By bringing patients, caregivers, clinicians, researchers, and advocates together, we can turn a scattered community into a coordinated force for better care, stronger research, and lasting change.
Our mission
To improve the lives of people affected by SFT by fostering community, advancing education, accelerating research, and advocating for better outcomes and access to care.
Our vision
A world where every person affected by SFT has accurate information, a supportive community, effective treatments, and ultimately, a cure.
The gaps we are here to close
A focused response to the challenges of an ultra-rare cancer.
Knowledge gaps
Many physicians see only one or two cases in an entire career. We expand access to trusted patient and physician education.
Research funding gaps
Ultra-rare cancers often receive less attention and fewer resources. We help accelerate research and treatment discovery.
Policy gaps
Patients face distinct challenges involving access, disability, clinical trials, insurance coverage, and long-term care.
Our future priorities
01Patient education
02Newly diagnosed patient support
03Caregiver support
04Insurance advocacy
05Research funding
06Clinical trial awareness
07Physician education
08Community and peer connections
Leadership
The people behind SFTF.
SFTF is being built by a growing group of patients, caregivers, clinicians, researchers, and advocates. Board and advisory members will be introduced here as they are confirmed.
Board of Directors
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Steve McBee
Co-founder & Board Member
Steve McBee is a co-founder and board member of the Solitary Fibrous Tumor Foundation. A long-term SFT patient and advocate, Steve brings more than 20 years of experience in the SFT community, along with a background in entrepreneurship, brand strategy, communications, and community-building. He is the founder and CEO of Superdeluxe, a branded merchandise agency.
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Dina Rollman
Co-founder & Board Member
Dina Rollman is a co-founder and board member of the Solitary Fibrous Tumor Foundation. She brings legal, business, governance, and nonprofit leadership experience to the foundation’s early development. Dina is helping guide SFTF’s legal formation, governance structure, and organizational foundation.
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Steve Ducòs
Board Member
Steve Ducòs is a board member of the Solitary Fibrous Tumor Foundation. As an SFT patient, he brings lived experience along with a professional background in healthcare communications, multicultural marketing, partnerships, equity, and patient-centered outreach.
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Sydney Zacher
Board Member
Sydney Zacher is a board member of the Solitary Fibrous Tumor Foundation. She brings a clinical research background and a personal connection to the SFT community through her family’s experience with the disease. Her perspective helps connect patient and caregiver priorities with research participation and patient engagement.
LinkedInMS
Marvin Schuldiner
Board Member
Marvin Schuldiner is a board member of the Solitary Fibrous Tumor Foundation. He brings experience in mediation, arbitration, business problem-solving, and organizational process. His background supports SFTF’s early work in governance, board operations, and practical decision-making.
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Bethany Lucas
Board Member
Bethany Lucas is a board member of the Solitary Fibrous Tumor Foundation. She is an associate professor at Regis University, where she teaches in biology, biomedical sciences, genetics, and genomics. As both a scientist and SFT patient, Bethany brings scientific training and lived experience to the foundation.
LinkedInScientific & Medical Advisory Board
Advisor to be announced
Clinicians and researchers with SFT and rare-sarcoma expertise.
Advisor to be announced
Clinicians and researchers with SFT and rare-sarcoma expertise.
Advisor to be announced
Clinicians and researchers with SFT and rare-sarcoma expertise.
Advisor to be announced
Clinicians and researchers with SFT and rare-sarcoma expertise.
Get involved
Help give the SFT community an organized voice.
Join as a patient, caregiver, clinician, researcher, advisor, volunteer, or founding supporter — or share your story to help others feel less alone.
SFTF Priority Survey
Tell us what you need.
Help shape the first community needs assessment for solitary fibrous tumor patients and families.
The first community needs assessment for SFT
Solitary fibrous tumor is rare enough that no one has ever formally asked this community what it actually needs. We're changing that.
This survey — open to patients, caregivers, and anyone who has lost someone to SFT — takes about 10 minutes. It asks about your diagnosis experience, the information and support you had (or wished you had), and what would have made the biggest difference along the way.
Your answers stay anonymous and go directly into shaping SFT Foundation's programs, resources, and advocacy priorities. There's no other data set like this for SFT — what we build next depends on what you tell us now.
Take the survey