Empowering change together
Our Mission
Our mission is to transform the future of Synovial Sarcoma treatment by driving groundbreaking research, expanding clinical resources, and fostering a strong patient and caregiver community. Through strategic partnerships with Children’s Hospital of Philadelphia (CHOP) and Penn Medicine (UPenn)—two of the world’s leading cancer research institutions—we are advancing critical initiatives that will shape the next generation of care for Synovial Sarcoma patients.
Our Story
The Synovial Sarcoma Foundation was born out of the extraordinary vision, generosity, and determination of Laura and Chas Spence. After their 16-year-old son, Callan, was diagnosed with Synovial Sarcoma, they refused to accept the status quo and made it their mission to drive innovation and advance critical research for this rare and aggressive cancer.
Without their unwavering commitment and leadership, this organization would not exist.
The Spence Family Synovial Sarcoma Foundation was launched in December 2022, in collaboration with Children’s Hospital of Philadelphia (CHOP). Laura and Chas Spence committed $600,000 to kickstart the initiative, securing CHOP’s dedication to building a comprehensive Synovial Sarcoma research program. Since then, the Foundation has raised over $2 million, fueling critical research initiatives at CHOP and Penn Medicine to bring new treatment strategies to both pediatric and adult patients.
Our Journey
01
December 2022
The Spence Family Synovial Sarcoma Fund is launched in partnership with Children's Hospital of Philadelphia (CHOP) and, Penn Medicine.
02
January 2023
The National Synovial Sarcoma Tumor Board is launched, bringing together top specialists from leading institutions to collaborate on complex cases.
03
June 2023
The Synovial Sarcoma Registry and Biospecimen Repository is launched at CHOP/Penn Medicine, becoming the first formalized, patient-driven registry dedicated to Synovial Sarcoma.
01
October 2023
A dedicated Synovial Sarcoma Research Lab is established at CHOP, enabling live lab model studies to explore new treatment pathways.
02
June 2024
TumorGlow Research is expanded at CHOP and Penn Medicine, advancing surgical imaging technology to improve tumor resection precision.
03
February 2025
The Synovial Sarcoma Foundation is officially launched to expand the mission and efforts of the Spence Family Synovial Sarcoma Fund.
.
Our Initiatives
Funding cutting-edge research at CHOP and Penn Medicine, including live lab models and biospecimen studies, to uncover new insights into the disease.
A first-of-its-kind effort collecting longitudinal patient data, imaging, and biospecimens to create a centralized resource for clinicians and researchers.
Bringing together top specialists from CHOP, UPenn, and other leading institutions to collaborate on complex cases and improve treatment strategies.
CHOP’s leadership in pediatric rare tumors, combined with Penn Medicine’s expertise in surgical innovation and precision oncology, ensures that discoveries lead to real-world advancements for patients of all ages.
Engaging patients and families through education, data-driven advocacy, and access to cutting-edge clinical trials.
Affiliations
Through these affiliations, the Foundation is dedicated to ensuring that groundbreaking research leads to tangible advancements in Synovial Sarcoma treatment and survival.
Children’s Hospital of Philadelphia (CHOP) is a world leader in pediatric cancer research and home to the Very Rare Malignant Tumors Program, led by Dr. Theodore Laetsch. The Foundation funds CHOP’s laboratory research and clinical initiatives, which are focused on:
- The Synovial Sarcoma Clinical Registry: A first-of-its-kind effort collecting longitudinal patient data, imaging, and biospecimens to create a centralized resource for clinicians and researchers.
- The Synovial Sarcoma Tumor Board: A monthly virtual meeting where leading specialists nationwide discuss complex cases and treatment strategies.
Lab Research: A lab funded by the Foundation, where live models help researchers study Synovial Sarcoma and develop new therapeutic approaches.
Penn Medicine is a global leader in cancer research, surgical innovation, and precision medicine, playing a vital role in advancing both pediatric and adult Synovial Sarcoma care. The Foundation collaborates with leading researchers at Penn, including Dr. Sunil Singhal, to support:
- TumorGlow Research – A revolutionary imaging technology that allows surgeons to “light up” tumors, improving precision and reducing the risk of leaving behind cancerous tissue.
- Bridging Pediatric and Adult Care – Penn Medicine’s team of sarcoma specialists, including experts in surgical oncology and molecular imaging, work closely with CHOP to ensure that discoveries in research translate into real-world treatment improvements for all patients.
Our Founders
Laura and Chas Spence
Laura and Chas Spence’s unwavering determination has driven groundbreaking advancements in Synovial Sarcoma research, fostering collaboration among top experts and accelerating the path to life-saving treatments. Their vision has laid the foundation for transformative progress in the fight against this rare and aggressive cancer.
Today, Laura and Chas continue to lead the charge, expanding critical research initiatives, forging strategic partnerships, and securing vital funding to push the boundaries of innovation. Their leadership ensures that research efforts at CHOP and Penn Medicine remain at the cutting edge, offering new hope and tangible advancements for Synovial Sarcoma patients and their families worldwide.
Those Leading the Charge
This is the team dedicated to advancing synovial sarcoma research at Children's Hospital of Pennsylvania & Penn Medicine
Dyani Rivera
Clinical Research Coordinator
Dr. Theodore Laetsch
Research Director
Lauren Gutstein
Program Manager
Liz Barone
Director of Development, CHOP
Join the effort
Get Involved
Join our passionate community to support impactful projects, advocate for change, and collaborate for a brighter future.