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.

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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.

A gloved hand holds a glass petri dish near a microscope in a laboratory setting, suggesting scientific research or medical analysis.

Affiliations

Through these affiliations, the Foundation is dedicated to ensuring that groundbreaking research leads to tangible advancements in Synovial Sarcoma treatment and survival.

Logo of Children's Hospital of Philadelphia featuring a stylized "CH" in light blue with a child's silhouette. The text "Children’s Hospital of Philadelphia" is in dark blue to the right.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.

Logo of Children's Hospital of Philadelphia featuring a stylized "CH" in light blue with a child's silhouette. The text "Children’s Hospital of Philadelphia" is in dark blue to the right.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.

Those Leading the Charge

This is the team dedicated to advancing synovial sarcoma research at Children's Hospital of Pennsylvania & Penn Medicine
A smiling bald man in a gray suit, light blue shirt, and red tie poses for a professional portrait against a softly blurred brown background.

Dr. Theodore Laetsch

Research Director

A woman with long curly black hair smiles warmly at the camera. She is wearing a white collared shirt and gold hoop earrings, with a blurred background behind her.

Dyani Rivera

Clinical Research Coordinator

A woman with curly brown hair, wearing glasses and a black shirt with white dots, smiles at the camera against a plain gray background.

Lauren Gutstein

Program Manager

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Liz Barone

Director of Development, CHOP

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Health Information Disclaimer

The content provided on this website is for informational purposes only and should not be considered medical advice. The Spence Family Synovial Sarcoma Foundation is a charitable organization, not a healthcare provider, and we do not diagnose, treat, or recommend specific medical care. All medical decisions, including participation in clinical trials or treatments, should be made in consultation with a licensed physician or qualified healthcare provider. While we strive to ensure the accuracy of the information we share, medical research and guidelines are constantly evolving. We cannot guarantee that all information on this site is complete, up-to-date, or free from errors. We strongly encourage visitors to verify information through trusted medical sources or by consulting their healthcare providers.

General Disclaimer The Spence Family Synovial Sarcoma Foundation and its affiliates, directors, and contributors are not liable for any decisions made based on the information provided on this website. By using this website, you acknowledge that the Foundation shall not be held responsible for any errors, omissions, or outcomes related to the use of this information.