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Author Topic: $700 million+ raised for neuro-muscular diseases and still no cure?  (Read 2902 times)
bernhard
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« on: August 19, 2007, 07:15:26 PM »

It makes me wonder where the $$$ is actually going.

The Labor Day telethon is coming up soon. And TV10 will shamelessly promote that fact.

And for the umpeenth consecutive year, I won't bother to watch it. Even though many people in the area deal with neuro-muscular afflictions, maybe some of them have connections to this forum.






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theboredom
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« Reply #1 on: August 20, 2007, 02:23:45 AM »

My dad suffered with Muscular Sclerosis for most of his life. He was constantly on a cocktail of diffferent drugs, none of which helped, they just dulled the symptoms. Luckily he didn't have it as bad as some people, who end up in wheelchairs, having to depend on others to do even the most basic tasks for them. Even with ridiculous amounts of money going towards research scientists are still pretty clueless about the disease; they aren't even sure what causes it. It's pretty frustrating.
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« Reply #2 on: August 20, 2007, 06:31:47 PM »

It's pretty silly to assume money = scientific progress. Hey maybe if give enough money to a grad student at UL, he'll unify the 4 fundamental forces in Physics. Rather than being suspicious of the philanthropic act of spending $700 million to cure a disease, you should be suspicious of the xxx trillion spent on 'curing' Iraq of 'terrorists'. At least the former has a clear cut victory in mind.

If I seem harsh, it's because after a couple of very expensive doctor visits (2 visits came to around 2k dollars), it was thought that I have a certain neuro-muscular condition. My first thoughts in the seconds after hearing these words were of the telethon and all the years I spent smirking away and rolling my eyes at it...that it was the very thing that probably paid for the discovery of the few treatment options (if any) I had at my disposal.

I know the disruption of your TV 10 programs will be tough. My thoughts are with you in this difficult time.
« Last Edit: August 20, 2007, 09:12:58 PM by king snake » Logged

bernhard
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« Reply #3 on: August 21, 2007, 12:00:21 AM »

Many people need help, and I didn't believe they were getting it despite much money raised over the years. I felt like there was corruption going on in that respect and still do.

I sure should've taken into account inflation in today's medical billing. In that respect I am guilty.

 

The end result is that money is raised to fight neuromuscular diseases, which there are many. So someone has to do it. Many things happen to be done by influential people whose hearts aren't always in the right place(e.g. TV10). It is definitely much better than nothing being done at all.

So a good thing is done IF all of the money after necessary non-scientific expenses is really going there. Which has been the main intent of this topic. The first line of the first post in this thread proves that.



This thread wasn't to be cold to those who suffer affliction.


No one deserves to suffer an affliction, no one.

« Last Edit: August 21, 2007, 12:38:17 AM by bernhard » Logged
byr0n
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« Reply #4 on: August 21, 2007, 01:08:53 AM »

I totally understand and believe that your intentions are good, and that you don't wish anyone harm, illness, or suffering. I don't doubt your heart at all. What I questioned was your logic. I'm wondering what set of premises you followed to arrive at the conclusion that corruption was afoot in the Jerry Lewis telethon.

I think it's just a personal pet peeve when I see people voicing unqualified strong opinions. That's all.

My unqualified opinion is this: You can not rush scientific progress. It's not so much the 'inflation of today's medical billing', though I'm sure that certainly has some impact. The limiting factor in science is the creativity and drive of our brightest individuals. Money helps grease the wheels, and is the lifeblood of any endeavor. It allows more minds to work on the same problem, which thereby increases the probability of brilliance. I don't think that lack of results implies corruption though. If that were the case, then any medical or scientific research ever could be considered rife with corruption until the day the results are achieved. I don't think that logically follows.


« Last Edit: August 21, 2007, 01:56:08 AM by king snake » Logged

elvin
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« Reply #5 on: August 21, 2007, 07:23:05 PM »




No one deserves to suffer an affliction, no one.



I disagree. People who hit kids. Rapists. Child molesters. Mothers who trade their young children for drugs. Federal prosecutors. These are only some of the folks that I think deserve to suffer an affliction.

They never do, of course. It's usually good people that get struck down by unfair medical circumstances.
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I used to be a sadistic control freak. Now I am a cunning unreliable ingrate. It's better.
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