Ep. 7 — How a patient with a rare tumor is taking personalized medicine to a new level through a unique non-profit biomedical research initiative / Vanessa Slavich, Head of Community, Celo & Peter Kane, Founder & Executive Director, Research to the People.
For nine years, Vanessa Slavich took a traditional, reactive, “whack-a-mole” approach to manage her battle against a rare and aggressive tumor, working with highly specialized doctors operating in various treatment silos. Frustrated with the outcomes, this year, Slavich is taking a new more proactive and strategic approach. She’s using her career in technology startups as a model for turbo-charging her research and treatment options in a unique way — which she describes in a recent post in Substack, called “The Startup Body: managing my health #Likea Boss.” And Slavich is “designing her health” in collaboration with Peter Kane, Founder and Executive Director at Research to the People, a non-profit biomedical research initiative based in San Francisco. Research to the People helps patients co-lead and direct new research and treatment options for their conditions. The group is creating a bold new model for patient-centric treatment and giving voice to patients who are grappling with rare and complex diseases. Slavich and Kane talk about their collaboration and how it represents a model for the future of precision, personalized medicine.
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Chitra Ragavan:
For nine years, Vanessa Slavich took a traditional reactive, whack-a-mole approach to manage her battle against a rare and aggressive tumor, working with highly specialized doctors in various treatment silos. Frustrated with the outcomes, this year, Slavich is taking a new, more proactive, and strategic approach. She's using her career in technology startups as a model for turbocharging her research and treatment options in a unique way, which she describes in a recent post in Substack called The Startup Body: Managing My Healthcare Like a Boss.
Chitra Ragavan:
Hello, everyone. I'm Chitra Ragavan, and this is Techtopia.
Chitra Ragavan:
Vanessa Slavich is taking a strategic approach to combat her rare tumor in collaboration with Pete Kane. He's Founder and Executive Director at Research to the People, a nonprofit biomedical research initiative based in San Francisco. Research to the People helps patients co-lead and direct new research and treatment options for their conditions. The group is creating a bold new model for patient-centric treatment and giving voice to patients who are grappling with rare and complex diseases.
Chitra Ragavan:
Slavich and Kane are both here today to talk about their collaboration and how it represents a milestone for the future of personalized medicine. Vanessa and Pete, welcome to Techtopia.
Vanessa Slavich:
Thank you for having us.
Pete Kane:
Thank you.
Chitra Ragavan:
Vanessa, tell us when and how you first found out about your tumor and what kind of tumor it is.
Vanessa Slavich:
I found out about it in 2011. I had just started working at Square. It was a early startup back then, and I was actually at my friend's graduation, and the chair was hitting my back in a very particular way. And I remember shifting back and forth and being like, "Man, this chair sucks." And then my friend looked at my back, and she's like, "Oh, you have a little bump."
Vanessa Slavich:
And I ended up getting a biopsy, and they found out it was what's called a desmoid tumor. It's also called aggressive fibromatosis, and it's a rare tumor. You're more likely to get struck by lightning than have this tumor. There's about 900 cases per year in the United States. And it basically is part of my connective tissue so it's everywhere in my body, but it's considered locally aggressive in that it likely won't show up in my foot or my brain. It'll probably always be somewhere near my back. But in the last 10 years, we haven't found a really effective treatment option.
Chitra Ragavan:
What was that like to know that you had a tumor that was rarer than being struck by lightning. That must've been quite a shock.
Vanessa Slavich:
I think the optimist in me is like, "Wow,
Ep. 7 — How a patient with a rare tumor is taking personalized medicine to a new level through a unique non-profit biomedical research initiative / Vanessa Slavich, Head of Community, Celo & Peter Kane, Founder & Executive Director, Research to the People. | Techtopia with Chitra Ragavan podcast - Listen or read transcript on Metacast
