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Wednesday, April 04, 2007

"So Much So Fast"

I was up till 4am watching Frontline on PBS. The documentary "So Much So Fast" was on and I couldn't miss it. It was about Steven Heyward and his battle with ALS (Lou Gehrig's Disease), a devastating, and ultimately, fatal disease. It brought up a lot of care giving memories for me, but in a good way.

Many of my long time readers will remember me talking about one of my favorite bloggers Brainhell (http://brainhell.blogspot.com/), who has been battling ALS since 2003. The ALS has progressed in him to the point where it will be difficult for him to keep blogging. Please, go to his site if you want to see an example of true grace and dignity under pressure.

The main part of the show was about the foundation that Steven Heyward's
brother's started, ALS Therapy Development Foundation. The foundation has gotten quite the reputation as being gonzo, because they want to skip all the (to them) unnecessary steps required by the FDA to get a medicine approved, and get the meds straight to the patients as soon as possible. The medical establishment feels they are reckless; I feel that they are on target. The ALSTDF want to take meds already approved for other illnesses that show promise for ALS and get them into trials as soon as possible. I know for a fact that's not a bad idea, since my husband John took Gleevec, not approved for ALL (leukemia), and it kept him alive for a YEAR he would not have had otherwise.
If you would like to check out the website for ALSTDF, it is http://www.als.net/aboutus/default.asp.

2 comments:

The Kept Woman said...

I found you over at Brainhell's place...I was so mad when I found out HOW Stephen died. It seemed so unfair that he had struggled through everything and chosen to live on and then a stupid accident ended his life when he was still ready to live.

Who knows though...maybe that too happened for a reason (i.e. to save him from suffering some other way)...I don't know, but it didn't seem fair.

zezrie said...

Unfortunately, most die under stupid circumstances. Its more about how we lived then hoiw we die.
Z