Important NY Times story about widespread fear of genetic discrimination. Many people who have PKD worry about this. They avoid talking about it, avoid testing their kids for it, and avoid the studies that could someday save them — and could someday save the U.S. more than $2 billion a year.

So much great research is being done on so many diseases — but if people are afraid to join the studies, a lot of that research will be wasted.

Some 80 people who care about PKD are going to Washington, D.C., next week to ask their congresspersons to pass GINA, the Genetic Information Non-Discrimination Act. My manager will be among them. Please add your voice to ours.
— Kenny