Opinion: Rediscovering a language of healing that doesn’t require ‘cure’

As someone who lives with a rare genetic disease, I am sensitive to the flippant ways that excited scientists and entrepreneurs toss around notions of “cures,” especially when genomic manipulation…

I am a biotech investor and entrepreneur. But more central to my worldview is that I am someone who lives with a rare genetic disease. This has sensitized me to the flippant ways that excited scientists and entrepreneurs toss around notions of “cures,” especially when genomic manipulation is involved.

No matter what work is in front of me, I see it through the lens of life with a disease-causing typo in the six billion DNA letters that make up the story of my genome. I have a C (for cytosine) where there should be G (for guanine), an error that sits within a gene that is essential for building the heart’s electrical current. Such a defect can lead to potentially lethal irregularities in my heart’s rhythm. The condition is called long QT syndrome.

Read the rest…