Friends & Family-
In January of 2022, our 16-year-old son, Callan, received a devastating diagnosis of Cancer, specifically Synovial Sarcoma. Synovial Sarcoma (SS) is a rare tumor afflicting less than 1 in 3-million cancer patients, many of whom are kids and adolescents. Due to the rarity, location, and size of Callan’s tumor, several medical institutions were conflicted on treatment options. Most gave Callan very little chance for survival.
The Spence family interviewed over 6 cancer hospitals before landing on Children’s Hospital of Philadelphia (CHOP). CHOP provided the most comprehensive and promising treatment, including Chemotherapy, Radiation and Surgery. Our family moved to Philadelphia to complete pre-operative treatment, and in June Callan underwent a 10-hour surgery to remove the tumor. The surgery was incredibly complicated involving 6 surgeons and required a 6-inch subclavian artery graft, the removal of his right upper lung lobe, as well as his right vagus nerve, right phrenic nerve and right jugular vein.
As of December, Callan is considered NED (No Evidence of Disease). A miracle. While there is no assurance that Callan or anyone diagnosed with SS will remain NED, the extension of life through comprehensive pre-surgical treatment, surgery, and post-surgical treatment and follow up is a Godsend.
During Callan’s treatment and recovery, we identified approximately 300 others who have been diagnosed with SS around the world. We recruited these individuals into a Facebook community called “Synovial Sarcoma Families” and developed a 37-question survey to further understand treatment options and outcomes. Over the course of 3 months, over 120 families filled out the survey. In early December we presented our survey results to the CHOP team. They informed us that nothing of its kind had ever been developed specifically for SS and asked us if we would be willing to lead the charge to develop a fund to support further research. The answer was of course, YES.
As such, on December 15, 2022, we established the Spence Family Synovial Sarcoma Fund at CHOP. Our goal is to raise $1,000,000 in donation commitments over the next 5-years ($200,000.00/yr for 5 years) to launch our fund. We committed $300,000 to kick-off the fund. The key tenets of the Fund are as follows:
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 need your help to complete the fundraising objectives. All money pledged will be exclusively managed by CHOP and is 100% tax deductible.
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