Li-Fraumeni Syndrome. Yeah, I hadn’t heard of it before, either. It’s a hereditary disorder that greatly increases the risk of developing multiple types of cancer. It’s also pretty damn rare, with about 400 reported families diagnosed since it was first characterized in 1969. (To be sure, its actual population incidence is unknown because it is widely screened.) That’s no solace to those who actually are diagnosed because it’s kind of a big deal.
Today, I attended a fundraiser for the Li-Fraumeni Syndrome Association. A friend sits on the board, because a close friend of hers is afflicted. That’s enough for me to want to contribute to advocacy and a cure.
[Edit: This post was in draft yesterday, but apparently never posted. Sorry about that.]