PASS MARRIAGE EQUALITY LEGISLATION!
New Hampshire’s congress may send their governor a similar bill.
Daily Archives: May 6, 2009
Introducing…! “The Orphan Diseases” and “The Jumping Frenchmen of Maine”!!!
Granted this thread title would suggest we’re talking about Punk Rock or Bluegrass acts; in truth, we’re not. A medical definition of an “orphan disease” is:
“A disease which has not been ‘adopted’ by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.
An orphan disease may be:
- A rare disease. According to U.S. criteria, an orphan disease is one that affects fewer than 200, 000 people.
- A common disease that has been ignored (such as tuberculosis, cholera, typhoid and malaria) because it is far more prevalent in developing countries than in the developed world.” Reference here.
The “Jumping Frenchmen of Maine” is the name of an unusual disorder that causes an extreme startle reaction to unexpected noises or sights – hence, an example of an Orphan disease. There are more than 6,000 rare or orphan diseases. (FDA Consumer magazine, November/December, 2003 Issue).
Like most people, I had not heard much about rare diseases, nor had reason to be concerned about them. That changed a couple of years ago when my son (who’s 16 now) started attending a high school in Wichita with a fellow student named Kyle Hicks. Kyle is 18 years old and has many interests that are like most of his fellow high school students. One thing that sets him apart from his peers is that he has a rare disorder that is called Recessive Dystrophic Epidermolysis Bullosa (RDEB for short). Kyle weighs 51 lbs and is just barely four foot tall – about the size of an average 7 year old.
Filed under Economics, Healthcare, Universal Healthcre
The MoDo and her Femme Fatale with Conservative Men: What’s up with that?
No one can dispute, the MoDo is smart. She writes well; her fiction is especially good and enjoyable (which happens to be most of her op-ed columns). The problem with her fiction is that she often falls prey to the redundancy of “satirizing satire”.
She knows and parties with the world’s elite and is invited back even though she tells all about their various Freudian slips , e.g. Condi Rice referring to GWB as her “husband.”
The problem with Dowd that has bothered me the most, anyway, is why are so many conservative men so hot and bothered about her? True: She is of Irish descent and was raised Catholic (I’m pretty sure at least); her dad was a D.C. cop; she is attractive; she seems to be pretty angst ridden a lot of the time… I am still not getting it, however, and I am sorry for my failing.
Are there answers to this particular riddle in life? I can accept it, if there are not.
Wednesday, 05/06/09 Public Square
Ernie Barnes, who painted Sugar Shack (above) died recently. But he left a legacy in his art which will live on forever. Do you ever wonder what you’ll leave, whether you’ve used your talents, accomplished what you’re capable of?
What might be on your mind today?
Filed under The Public Square
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