A TED talk by the director of the NIH, found this courtesy of UMDF. Interesting view and talk about drug cycles, how long it takes and the urgency and need.
"Today we know the molecular cause of 4,000 diseases, but treatments are available for only 250 of them. So what’s taking so long? Geneticist and physician Francis Collins explains why systematic drug discovery is imperative, even for rare and complex diseases, and offers a few solutions -- like teaching old drugs new tricks.
Francis Collins is the Director of the National Institutes of Health and was a key player in the completion of the Human Genome Project. Full bio » "
I did find it laughable when he was talking about whole genome sequencing and how it's gone from a 100,000 cost to a $10,000. So many families who are looking for answers for their child simply can't afford that, on top of medical bills and it's a battle to have insurance even consider it.
Somewhere about minute 8, the whole talk becomes clear as mud.
This other link is the exact opposite...
Parenting a Child with No Future
"What does being a mother mean when your baby is dying? How do you parent a child with no future? These questions needle the reader throughout Emily Rapp's moving and beautiful new book, "The Still Point of the Turning World."
Not a book I'm ready to handle reading yet, or maybe never, but it was so insightful and really grasped the way I feel. I remember I was at a dinner thing a few weeks ago around a big table of people I really like, two of my friends were talking about "THE" school, sports and other extracurricular endeavors etc for their totally awesome and cute kids. I found myself growing angry, then jealous and finally relieved that I have a kid I can just love without fear of how they will be "when they grow up." I can worry and live in the moment with Will.
I will deal with not whether or not Will is at THE best school, sports team or whatever, but rather enjoy every moment of where he is and whatever he is doing to the best of his ability. Don't get me wrong, I am totally going to set Will and any other kids we have up for success with THE right stuff for them, but the difference for me is I will not and cannot agonize over it. I just want to live in the moment of happiness with them. So much easier said than done, but this article really captured the essence of all those emotions.
Happy Easter. Sneak peak of all the blogging that I'm behind on... my little bunny at school during the Egg Hunt.