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.

--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 . . .

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

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.

Research is getting closer for us too:

http://neurotalk.psychcentral.com/sh...d.php?t=222678

To all,

One on fifteen Americans has nerve damage and there is no powerfull lobby organisation.!!!One on fifteen is epidemic.
I agree with many of your pionts,sure this is looked ad as secondary.
And there is no hollywood celebrity how can advocate and raise funds.
Probably most people cant even image what it is to have some kind of nerve damage.
Everybody knows somebody or has a family member who has cancer or died from cancer so ya its easier to raise funds.

For us with CMT there is Todd MacCullough who played with the Philadelphia 76ers until CMT stopped that.

There is Julie Newmar "Cat Woman". She is slowly losing her ability to walk.

That's just a couple I know with CMT although I do not think they are talking that much about it.

There is much research going on with a dedicated Scientific Research Board.

Thank you for pointing that one out mrsD! Interesting mechanic, let's hope it proves viable. This approach sounds much more sophisticated compared to sedating your whole body with medication...

Why do all alcoholic celebrities die before they get the chance to develop neuropathy? I believe Charles Darwin had some autonomic issues, too bad he's long gone. Stephen Hawking is a good visible marker of the need of research for neuro diseases!

Hummers are an eye catcher but ain't build to last long in the commercial world, hybrids and EVs are the future