Help me understand

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twinmommie72

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Jul 27, 2010
Messages
132
Reason
PALS
Diagnosis
08/2010
Country
US
State
Va
City
Southern
If the cause has been identified, why doesn't the FDA fast track a treatment? Why am I hearing "maybe" a treatment will be found in 2030? I have made peace with my diagnosis & the cure may not arrive to save me. Just help me understand why why why aren't they working around the clock to knock this out?
 
That Np001 is supposed to stop progression. What the heck do we have to lose? Move it along asap. This 2 to 5 year wait is dumb.
 
Susan I agree! Screw the placebo crap at this point! Just give NP001 to those that Want it. It's worth the risk to me.
 
the main reason i believe is lack of funds
 
If the cause has been identified, why doesn't the FDA fast track a treatment? Why am I hearing "maybe" a treatment will be found in 2030? I have made peace with my diagnosis & the cure may not arrive to save me. Just help me understand why why why aren't they working around the clock to knock this out?

One, you are assuming that a real cause has been found. Personally, I have my doubts about that, but I've already been accused of being a killjoy enough times for one week to beat that drum any further.

Second, if a cause has been discovered, we need to have enough knowledge about the way that things are supposed to work to be able to figure out how to adjust the process back to operating normally.

Finally, once we have determined that the first two conditions have been met -- which we appear to be a long way away from being able to state as fact -- then we can start to develop the therapeutic tools needed to change things, which may take years to do in itself -- especially if gene therapy or complicated drug design and synthesis is required is required.

A question for both of you -- who is going to "give" NP001 to anyone? It's unapproved for use in the US (or anywhere else in the world, for that matter). There is no hard evidence that it works -- anecdotal evidence from a couple of participants in a double-blind research study who don't know whether they are actually receiving the drug or not, notwithstanding. And, frankly, I've seen enough drug recalls of FDA-approved drugs in my lifetime to wonder whether fast-tracking any drug is appropriate or not.
 
It may also be a question of liability.

It is ironic that we have easy access to a bunch of drugs that can kill us (cigarettes, alcohol, caffeine and street drugs) but not something that might save us.

What we need is someone with a connection to the mafia or organized crime. We would have the stuff in seconds. ;)
 
Your right Allen, I do understand.
Richard, would you like me to give my Uncle Guido a call?
After WWII my Dad came home from the Pacific with double pneumonia on top of chronic bronchitis. They sent him home to die. My grandparents weren't about to lose another son. His brother died in Battle of the Bulge. My grandfather took his life savings and had a drug smuggled in from Europe in a false bottom of a suitcase. As the Dr injected this med into my Dad he felt his lung fill with air and he was able to breathe. It was probably a steroid, he never found out what it was.
Would I recommend this? No. Would I do this if it was my family member? Maybe. It's just a story on how far a family would go to save their son.
 
I say call Uncle Guido
 
If thats a true story I would bet it was cocaine. I went to our childhood doctor up until he died at 87 a couple years ago, you'd go in there with a sinus infection and he'd have you sit on the table leaned back and he'd take a stick cotton tip and push one in each nostril, then hand u a box of kleenix and leave the room. He'd come back remove the q-tips and I never k new that much crap would fit all up in there, it was so gross, string n string would continually come out a persons nose. Rumor was back in the day he used cocaine on those tips. He was so funny, I would walk in and he'd say "Look what we have here, a beautiful baby and now a beautiful woman". I would laugh and tell him, yeah your mouth to Gods ears, fix me padre'.
 
Yes Diane you might be right. I think it might have been a type of Prednisone.To add to the story they had to get a Dr to administer this. They found a Dr that lost his med license for doing illegal abortions. (this was 1945). They had to sneak him in and out of the house just in case my Dad died after the injection.
 
Prednisone wouldn't have reacted that quick, but whatever it was thank God it worked huh?
 
Twinmommie, this is how it was explained to me. I am no expert so I am just passing second hand info as it was given to me.

The reason the studies are done with double blind test including placebo's is because there is no standard of treatment yet available for ALS. They have nothing to measure against except if it works or doesnt. (This has to be proven to the fda before it can be prescribed for a illness). Because human brains can percieve a drug as a cure and actually show improvement the actual drug must out perform the placebo effect in the study to be even considered. If I understand this correctly once there is a "Gold standard" to compare against they may not have to include so much placebo. Allyoop would be a good person to ask she does studies on experimental drugs.

I am with you I dont care if it the placebo effect or what I have nothing to loose. But if helps the next generation of diagnosis's I will gladly participate.
 
Praying they hurry with this Reef! Thanks so much for the link. Exciting news!
 
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