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Old 07-08-2015, 04:09 PM #1
jurgen975 jurgen975 is offline
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Default Why is there not something for PN as....

Why is there not something for PN as the Roman Reed foundation
A fundation that funds cures?

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Old 07-09-2015, 03:18 AM #2
Neuroproblem Neuroproblem is offline
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Why is there not something for PN as the Roman Reed foundation
A fundation that funds cures?

PN has many idiopathic causes, and many caused by known diseases, yet the mechanism of how PN occurs in there is very poorly researched area. Its like finding a cure to cancers, there is so many types of cancer its hard to find a universal cure, as each type responds differently to treatment.
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Old 07-09-2015, 06:26 AM #3
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Default There are organizations that consolidate research into neuropathy--

--and also mediate grant funding for same, as well as act as clearinghouses for information about the condition and also do some patient advocacy.

The most prominent one now is the Foundation for Peripheral Neuropathy, headquartered in Chicago. (It only has three full time employees, though.) I say now as the Neuropathy Association recently disbanded after about two decades--it too was small and had trouble competing for funds.

i don't have a lot of time today, but searching my name on this forum will lead you to a LOT I've written (or ranted about) previously as to the problem with getting attention for a disease often considered secondary to something else (such as diabetes), the lack of celebrities with neuropathy coming forward to focus attention, and the problems with the major organizations and how they have approached the public attention battle . . .
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Old 07-09-2015, 09:00 AM #4
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Here is an interesting site:

https://www.foundationforpn.org/

I see CMT is on there.

This site is interesting as well.

http://www.ninds.nih.gov/find_people.../volorg924.htm
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Old 07-09-2015, 09:23 AM #5
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Perhaps the more consistent syndromes, which have a clearly defined patient group, will be easier to solve first - As far as I know (which is little) even these sufferers have no real effective treatments available as well. (such as MS, Parkinson, Alzheimer - etc)

It's just tough to make such a complex system as the nervous system grow back, especially if its continuously under attack by an unknown mechanism... As cancer is mostly the removal of bad cells, I'd say its a lower hanging fruit.

Let's hope science brings PN in the treatment range - nanobots, algorhythms, stem cell, gene therapy, artificial intelligence, personal medication --- all the futuristic stuff .

It's not like there's nothing being done, but ****** thing is that the paradigm for nervous system regeneration is on the low end of its evolution. When the doors open towards nerve treatments, there should a faster development in this area of research.

Stuff like the bloodcell to nervecell transformation will open up doors sooner or later. (I can't post links due to restrictions yet, but I bed most of your have read about it...) The real problem is, nobody wants to wait for it to happen. Let's hope all cancer get solved really soon, so scientists get hungry to solve other stuff!

Last edited by Jomar; 07-09-2015 at 11:20 AM. Reason: per guidelines
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Old 07-09-2015, 12:10 PM #6
zkrp01 zkrp01 is offline
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Perhaps the more consistent syndromes, which have a clearly defined patient group, will be easier to solve first - As far as I know (which is little) even these sufferers have no real effective treatments available as well. (such as MS, Parkinson, Alzheimer - etc)

It's just tough to make such a complex system as the nervous system grow back, especially if its continuously under attack by an unknown mechanism... As cancer is mostly the removal of bad cells, I'd say its a lower hanging fruit.

Let's hope science brings PN in the treatment range - nanobots, algorhythms, stem cell, gene therapy, artificial intelligence, personal medication --- all the futuristic stuff .

It's not like there's nothing being done, but ****** thing is that the paradigm for nervous system regeneration is on the low end of its evolution. When the doors open towards nerve treatments, there should a faster development in this area of research.

Stuff like the bloodcell to nervecell transformation will open up doors sooner or later. (I can't post links due to restrictions yet, but I bed most of your have read about it...) The real problem is, nobody wants to wait for it to happen. Let's hope all cancer get solved really soon, so scientists get hungry to solve other stuff!
The body has its own built in speed-bump to nerve healing and regrowth. Some of the stuff in the pipeline of rat and mice experimentation is breaking down those speedbumps. If I remember right P-10 Knockdown might be searchable. However I don't think Cancer is going to move over and yield. That is still like a Hummer vs. a powder blue Prius. IMHO. Ken.
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Old 07-09-2015, 01:36 PM #7
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Research is getting closer for us too:

http://neurotalk.psychcentral.com/sh...d.php?t=222678
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Old 07-10-2015, 09:05 AM #8
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Quote:
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Its like finding a cure to cancers, there is so many types of cancer its hard to find a universal cure, as each type responds differently to treatment.
At least there are many treatments available for many types of cancer. The only treatment protocol for neuropathies is symptom management, a vegan diet and light to moderate exercise which as we know, is nowhere near adequate.
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Old 07-10-2015, 04:16 PM #9
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At least there are many treatments available for many types of cancer. The only treatment protocol for neuropathies is symptom management, a vegan diet and light to moderate exercise which as we know, is nowhere near adequate.
I am able to olympic weightlift once a week or mountainbike but not 2 days in a rowe if i am doing that the nerves in my feet get very iritated
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Old 07-10-2015, 04:24 PM #10
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Same here. If I push myself even slightly on a day when I can workout, I am in bed for the next three days or more recovering.
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