Synovial Sarcoma Fund

The Spence Family Synovial Sarcoma Fund was launched in December 2022, in collaboration with Children's Hospital of Philadelphia (CHOP). Laura and Chas Spence - whose 16 year old son Callan Spence was diagnosed in 2022 - committed $600,000 to kick-off the fund raising, which has now surpassed $1,100,000. The Fund will be led by Dr. Theodore Laetsch, Very Rare Tumor Oncologist at CHOP The objectives of the Fund are as follows:

1.Synovial Sarcoma Clinical Registry

The Synovial Sarcoma Clinical Registry at CHOP seeks to leverage and formalize the vast amount of data collected across over 200 Synovial Sarcoma Patients via the Facebook Group called Synovial Sarcoma Families. 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 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.

Hospitals Participating in the National Synovial Sarcoma Tumor Board:

SS National Tumor Board

Spence Family Synovial Sarcoma Fund hosted their 1st annual donor update in Austin, TX. Featured Speakers included:

- Dr. Ted Laetsch, Very Rare Tumor Oncologist, Children's Hospital of Philadelphia (CHOP)

https://www.chop.edu/doctors/laetsch-theodore-w

-Dr. Stephanie Fuller, Cardiothoracic Surgeon, Children's Hospital of Philadelphia ( Chop)

https://www.chop.edu/doctors/fuller-stephanie