Hope, Research, and the Future of Solitary Fibrous Tumor
A rare cancer. A determined patient. A world-class researcher.
In this powerful episode of the Living with Metastatic Cancer series, Dr. Peter Crane sits down with patient-advocate Joel Horowitz and sarcoma medical oncologist Dr. Gina D’Amato to share how one partnership is accelerating a global movement in solitary fibrous tumor (SFT) research.
From the creation of the Horowitz SFT Initiative to the launch of the first global Solitary Fibrous Tumor Patient Registry, this conversation is about science, courage, and the belief that collaboration can change—and even save—lives.
Timestamps
00:00 — Welcome to the Doctors Making a Difference LMC Series
00:23 — Introducing Joel Horowitz & Dr. Gina D’Amato
02:05 — Joel shares his diagnosis and early SFT journey
04:00 — Meeting Dr. D’Amato & building a care partnership
06:12 — The beginnings of the Horowitz Solitary Fibrous Tumor Initiative
07:25 — How the research program works: molecular profiling, mouse models & treatment pathways
08:55 — Why a global registry is essential for rare cancers
10:03 — Introducing the Solitary Fibrous Tumor Patient Registry
11:27 — How patients can enroll (and how Sylvester makes it easy)
12:40 — Joel’s reflections as a 9/11 survivor & potential links to exposure
14:18 — The “Dream Team” working behind the scenes
15:05 — What this research means for current and future SFT patients
16:40 — Funding clinical trials & Joel’s $100K donation match
18:10 — Dr. D’Amato explains the goals: new treatments, biomarkers, and future gene therapy
20:00 — How patient samples (tumor, blood, hair) fuel discovery
21:45 — Understanding the NAB2-STAT6 mutation & why it matters
23:30 — Current updates from the lab & upcoming research presentations
25:45 — High-throughput drug screening: testing 500–9000-drug libraries
27:12 — Early findings & the potential of HDAC inhibitors
29:10 — Why collaboration across the U.S. and internationally accelerates progress
31:00 — Joel’s message to patients: “We’re going to make a difference.”
32:10 — The call to action for physicians worldwide
33:22 — How to join the registry & support the initiative
34:40 — Final reflections from Dr. D’Amato & Joel
36:10 — Dr. Crane wraps up with next steps for patients, families & clinicians
IMPORTANT LINKS
Solitary Fibrous Tumor Patient Registry
https://www.solitaryfibroustumor.org/
Horowitz Sarcoma Research Fund
https://development.miami.edu/page.aspx?pid=383&id=ec01162f-1d17-4c44-89d6-addb185e07b5
Sylvester Comprehensive Cancer Center – Sarcoma Program
https://umiamihealth.org/en/sylvester-comprehensive-cancer-center/sarcoma-program
Doctors Making a Difference Website
📣 ABOUT THE GUESTS
Joel Horowitz — Patient, advocate, and founder of the Horowitz Solitary Fibrous Tumor Initiative. His generosity and determination have accelerated global SFT research and the creation of the first worldwide registry.
Gina D’Amato, MD — Sarcoma medical oncologist and Professor of Clinical Medicine at the University of Miami Sylvester Comprehensive Cancer Center. She leads the clinical and research efforts behind the SFT initiative and registry.
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