Shannon's Desmoid Tumor Chemo and IVF Fund

On August 13, 2013, my sister Shannon was diagnosed with a rare tumor called a Desmoid, also known as aggressive Fibromatosis. Desmoid tumors arise from a cell called a “fibroblast” or “myofibroblast” that proliferate excessively.

Until 2005, little research had been done, and few existing treatments existed. At this time, the Desmoid Tumor Research Foundation was founded with the goal of transforming this situation by facilitating and funding desmoid tumor research and providing patient information and support.

Shannon has been living with her tumor for 9+ years, and since then, it has grown to an unbearable size on her left hip. Her tumor causes immense pain, and she struggles to stay on her feet for long periods throughout the day.

There is no one standard of care treatment protocol for desmoid tumors. So since the "waiting and watching" was not showing signs of depreciation, and desmoids have a high risk of recurrence even with good surgical margins, Shannon decided to try chemotherapy to kill the tumor. She started her first round on August 12, 2022, and has since completed three successful rounds. She is now beginning to feel the after-effects of the treatment.

Before starting chemo, she also went through IVF and froze her eggs in hopes that one day she will be able to bring another life into the world. She has a 3-year-old daughter, Nora ❤️

Her family has been hit with hefty medical bills, and I'm working to raise money for her and help bring awareness to this rare disease in hopes of finding a cure. Any help is greatly appreciated. I will be running the Dietz & Watson Philadelphia Half Marathon on November 19th and representing the DTRF.

Please keep Shannon and her family in your thoughts and prayers as she goes through this difficult and challenging time. Thank you for your consideration and support!