Shane’s Legacy Gift to cc-TDI

My name is Michele and I am a scientist, a cc-TDI Board member and Shane’s Mom. 

Shane is my third child and our family’s connection to childhood cancer. Shane’s life may have seemed short to some, but those who were touched by his gentle spirit understood that the quality of his life far exceeded the quantity of time. Whether playing nerf with his brother Chase, or making us laugh as he danced to Frozen songs with his sister Ella, Shane taught us the value of perseverance and hope. Even though Shane was diagnosed at 8 months with an incurable childhood muscle cancer, rhabdomyosarcoma, Shane always found a way to make us smile. 

Paul and I knew Shane was among the 1 in 5 children whose cancer has no cure.  When treatments were no longer working, we wanted to help other parents of children like Shane (and Iris, and Eva, …) in the future.  At that time, cc-TDI was a fresh startup – an OHSU 501c3 nonprofit spinout whose mantra was Families and Scientists in Partnership for Cancer Cures.  cc-TDI’s scientific director, Charles Keller, was an internationally recognized expert in rhabdomyosarcoma research and drug development.  At the end of Shane’s life, we sent a Legacy Gift of after-life tumor tissue to cc-TDI with the hopes of helping future kids afflicted with this cancer. Shane’s tumor was the first that cc-TDI would collect and study.

Shane’s tumor became a cell line, shared many times around the world. His tumor also became an Avatar Mouse, publicly available to all researchers and used to discover an Achilles’ Heel of rhabdomyosarcoma, published as the cover article of the scientific journal, Science Signaling.  A national clinical trial resulted. Shane’s tumors’ DNA findings can be downloaded for research from a public database. Altogether, Shane’s tumor has been a part of discoveries in more than a half dozen scientific publications. 

This year has been like no other. The COVID-19 pandemic created obstacles, but cc-TDI rose to the occasion. They were able to use innovative techniques to make sure they never stopped working for the children and their families affected by childhood cancer. cc-TDI continues to accelerate towards new cancer cures, in partnerships with families, and bringing academic and pharma research teams to the cause.  Please help us in our mission to help children like Shane by volunteering your time, supporting our research through donation, and letting your friends know Shane’s story.

With gratitude,

Michele Metzgar, Shane’s Mom

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