I had a friend die last year of cystic fibrosis, waiting for a lung transplant. I applaud your effort. I don't know of any research offhand, but Jennie's mother fought long and hard for her daughter and she might know of something that could use the funding. With your permission, I'll ask her.
I have two cousins with cystic fibrosis. One takes very good care of herself and yet is in and out of the hospital all the time. Her younger sister does not take care of herself at all but seems to not be as sick all the time. Both are in their 40's now and we feel very lucky to still have them with us.
I will ask them to see if they have any recommendations.
I'm doing parallel research before I ask them. That's who got most of the money through the years. For a lot of years. And still people are dying from this.
At some point you've got to wonder if doing the same things will get the same results.
I took a quick look at the press releases about cystic fibrosis research on Science Daily, and saw nothing but research about treatment and extending life; not one of them was about finding a cure. Maybe you'll have better luck.
Comments 39
A reprint of the column I wrote about her, and the blog post behind it.
Reply
Lyn never got a transplant at all. It was not a good way to die.
But our goal here is not to make transplants available or to make dying of it easier: it's to get the genes to shut the fuck up and fly straight.
Reply
I have two cousins with cystic fibrosis. One takes very good care of herself and yet is in and out of the hospital all the time. Her younger sister does not take care of herself at all but seems to not be as sick all the time. Both are in their 40's now and we feel very lucky to still have them with us.
I will ask them to see if they have any recommendations.
Reply
Reply
At some point you've got to wonder if doing the same things will get the same results.
Reply
Reply
Reply
Reply
Reply
Leave a comment