First of all thank you so much for the warm welcome. A few kind folks in the community suggested that I share my research as a discussion, so here I am!
I’m Ivy, Lead Anthropologist on the Muse Storytelling Team. We’re an Emmy-award winning storytelling studio based in Portland, Oregon and we’re working on a project to better understand what it’s like to go through life as a kidney transplant recipient.
We’re working with Transplant Genomics, an innovative new company, co-founded by a scientist/entrepreneur who is a transplant recipient himself! They are dedicated to improving the outcomes of kidney transplants (and eventually other organs, too!) through the development of new, non-invasive testing that can help guide decisions impacting patient health.
Transplant Genomics wants to help improve organ transplant outcomes by extending graft lives, and ensuring that doctors have the best information to make decisions that will help prevent the likelihood of a transplant being rejected, or a patient dying early due to excessive drug treatment.
The information from these blood tests, based on genomic analysis, can help predict and prevent rejection without having to perform an invasive, painful and costly
biopsy. The information provided by these tests can help physicians tailor drug treatment to specific patients, creating opportunities for “personalized immunosuppression.”
As storytellers, our role is to better understand how folks navigate the transplant experience, so we can help empower recipients to become more involved in their care, raise awareness around alternative treatment options, and hopefully, even help get these tests covered by Medicare and commercial insurance companies.
But in order to do so, we need to hear real stories from real people with real experience.
That's where you come in! I'd love for you to share your thoughts in this quick survey!
It won't take long, and if you sign up for an interview, you'll be compensated for your time!
Please feel free to reach out with any questions.
I'm really looking forward to hearing YOUR story!