The administrators of the Facebook group, Chas and Laura Spence, had gone to 6 cancer centers for treatment for their son Callan, pictured above. Callan underwent a heroic 10 hour surgery along with extensive radiation and chemotherapy to treat his SS. As a result of the treatment at CHOP Callan is now NED (no evidence of disease). Since creating the Facebook page, they identified approximately 300 people who have been diagnosed with SS around the world. 

The survey was created to understand treatment options and outcomes.  Over the course of 3 months, over 120 families filled out the survey.  In December 2022, they presented the survey results to the Children’s Hospital of Philadelphia (CHOP).  CHOP informed them that nothing of its kind had ever been developed for SS and asked if they would be willing to lead the charge to develop a fund to support further research.  The answer was of course, YES.  Currently, we have built the single largest data repository of Synovial Sarcoma patients in the world!

To start the advancement of research, Chas and Laura Spence pledged $500,000 and started “The Spence Family Synovial Sarcoma Fund”. The balance of $500,000 was raised in donation commitments and the tumor bio bank and national tumor board (described below) were fully formed by June 2023.

The key tenets of the foundations are two-fold:

1.Development of Synovial Sarcoma Clinical Registry

The Synovial Sarcoma Clinical Registry at CHOP seeks to leverage and formalize the vast amount of data the Spence family has collected. The formalized registry will include longitudinal clinical and outcome data, treatment, imaging, genomics, and biospecimens from consenting patients. This registry will provide a one-stop data source for clinicians and researchers who seek more information about providing care for and advancing research around synovial sarcoma. Bringing together this data is a critical next step for the next vital breakthrough for synovial sarcoma patients. 

2. National Synovial Sarcoma Tumor Board

When faced with a diagnosis like synovial sarcoma, seeking second, third and fourth opinions on treatment can be both cost and time prohibitive. With this in mind, CHOP seeks to develop a one-of-a-kind, collaborative, external-facing national synovial sarcoma tumor board. The board will meet once a month virtually to bring together a multi-disciplinary team of national experts to discuss synovial sarcoma cases occurring in children, adolescents, and young adults.  The purpose of the board will be to advance the level of care provided, share expertise within the medical community, and ultimately, to help provide patients and families access and options for the complex care that synovial sarcoma patients often require.  

We are asking you to help continue to push the research for a cure for Synovial Sarcoma. We need an additional $500,000 in funds to dedicate lab time specifically for synovial sarcoma research. You can do this by donating to Children’s Hospital of Philadelphia. Donations are made directly to Children’s Hospital of Philadelphia through The Spence Family Synovial Sarcoma Fund, a 501 (c)(3) non-profit. All donations are tax deductible up to an amount based on donor’s taxable income. 100% of donations go directly to The Spence Family Synovial Sarcoma Fund and is used by the Children’s Hospital of Philadelphia to pay for the research center. This website is paid for and managed by Seth Quinn and his family. We do not receive any donations to maintain this website.

For tax planning purposes, multiple year donations can be arranged. To make an annual pledge, please send an email to: Liz Barone, Director of Development, Cancer Center at baroneeb@chop.edu

Examples of Annual Pledges:

• Pledge: $2,000/yr for 5-years for a total of $10,000

• Pledge: $5,000/yr for 5-years for a total of $25,000

• Pledge: $10,000/yr for 5-years for a total of $50,000

• Pledge: $20,000/yr for 5-years for a total of $100,000