I had an aunt by marriage who died of cystic fibrosis. Her brother in Texas had died earlier with the same symptoms but had never been diagnosed with anything. For that matter, I have a medical problem and a theory (probably crackpot or faddist) of what sort of research might have come up with a cure for the basic problem before I developed complications. There has been a little research along these lines in mice the last three years or so. For at least a generation I have felt that research funds often concentrate on politically selected subjects and are not correctly allocated. One of the reasons I applaud the Gates Foundation for working where progress seems possible.

At age 73 they are not going to offer me a transplant.....and in any case I would not want one, there are more deserving cases.
Going reasonably quickly due to lung/heart failure appeals much more to me than losing my marbles and/or being bed ridden in a vegetable state

As far as I know mine is not genetic, not aware of anyone else in my family, past or present.

I'm sorry to hear about that Alan. It's always possible that some unrelated discovery may apply to your situation though so it's worth setting up a Google alert. You can sign in to your gmail account an manage your alerts or do them one at a time here - http://www.google.com/alerts. Best of luck to you and please keep us posted. I hope you can still find joy and beauty.

This will sound crazy, but there has been some research that shows that eating what your immune system is attacking can cause it to become tolerant. I can't find a good article on the subject with a quick google, but here is something to show you that I'm not insane: