Our daughter was diagnosed at age 4 with Gorlin's Syndrome, which is caused by a defect in this gene. She has spinal deformities similar to spina-bifida, and thousands of Basal Cell Carcinomas (BCC's), which are skin cancer, but with a lower-case c. The experience of being given this news was numbing, and in light of all the information we received, a cute name for the gene involved barely registered one way or the other.
My wife joined the board of the Gorlin's Syndrome Alliance, which is a non-profit organization that helps people with this disease find help, and also tries to push medical science forward in ways that can help. Their mascot is a hedgehog (for obvious reasons) wearing a hat - because people who have this condition have to avoid UV exposure all the time. If you're interested, please check them out: https://gorlinsyndrome.org/ (Currently suffering slow server).
A bit of whimsy isn't the worst thing, when the news is otherwise pretty hard.
My wife joined the board of the Gorlin's Syndrome Alliance, which is a non-profit organization that helps people with this disease find help, and also tries to push medical science forward in ways that can help. Their mascot is a hedgehog (for obvious reasons) wearing a hat - because people who have this condition have to avoid UV exposure all the time. If you're interested, please check them out: https://gorlinsyndrome.org/ (Currently suffering slow server).
A bit of whimsy isn't the worst thing, when the news is otherwise pretty hard.