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Why is Tissue Not Sexy?

posted on July 13, 2018
Collaboration ● Family Experiences ● From The Heart ● Research
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Denver is a great city… just not as “hippie/granola” as I pictured. We went for ISPNO… the International Symposium on Pediatric Neuro-Oncology and came away feeling encouraged and excited that tissue donation is absolutely the right focus for Swifty.  ISPNO is held every other year and doctors and researchers from all over the world attend.  So many brilliant people teaching and learning from one another to find the cure that means so much to us.

Best of all, meeting after meeting, researcher after researcher emphasized that without tissue they cannot do the work needed to find a cure. According to Dr. Stefan Pfister, a Director at Heidelberg University Hospital: “It is not sexy but it is the most fundamental thing you could fund. Tissue is one of the most fundamental things we need to understand the homogeneity of tumors and to start different research projects….  it is impossible to get government funding for tissue donation and insurance won’t cover it.” But, as you know, Swifty is!!

Why is tissue not sexy? Because the cure will be found in a clinical trial and that’s what most funders want to fund, they want to fund the final step. But tissue is required in all the steps leading up to the trial.  No tissue, no trial.  Just as no one sees the foundation of your house, we all know without that foundation, there wouldn’t be a great room, a study or a kitchen for your family to gather in.  Swifty is helping build the foundation for the clinical trials that will lead to the cure.  It may not be sexy, but we’re ok with that.  I’ve included a picture of Michael with one of his favorite hats from his extensive hat collection: looks like Michael knew one day we would be redefining what “sexy” looks like…

 

Patti Gustafson
Patti Gustafson is Michael, Bridget and Ian's mom and has been fortunate to be married to Al for 30 years. She's been grateful to live most of her life in Naperville surrounded by her family and life-long friends. Her role at the Swifty Foundation is Chief Operating Officer.... which sounds impressive but really means she pitches in where she is needed!

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