How do we get the word out?
 

If it is estimated that 10-20million Americans have Nueropathy and yet only about 7% have ever heard of it, how do we raise awareness of this chronic neurological disease? Any body have any ideas?

get it on Oprah....
 

Until she gets it, we will have to wait, I guess.

If you could have seen the blitz on the questionable remedy called Airborne that she started, you'd understand. :p

Now that is the best idea yet.

I'm going to write my letter to Oprah (and to Dr. Phil, and to Montel Williams).

Can't hurt!!

Melody

That is a great idea. I hope you do write to them. I will too. Anyone else want to join in??

We should ALL write them. I'm game - how do we find the address info? Any way we can avoid being put in a big pile of fan mail?

Nancy

Until we get someone famous to admit it (Andy Griffith has PN & I think Mary Tyler Moore - as a result of her Diabetes- but they won't talk about the PN)
and steps up like Michael J Fox with Parkinson's - we won't get the coverage we deserve.
I hope the letters may motivate someone, but I think unless you can get someone with a severe case to be a 'poster gal/guy' the interest just ain't there.

lacks star power
 

I think Bob and MrsD are absolutely right. There have been celebs w/ PN like Janet Leigh, Johnny Cash, Julia Child, and Andy Griffith (Guillen-Barre) but no-one has done for PN what Michael J. Fox has done for awareness of Parkinson's disease or Christopher Reeves did for spinal cord injuries and quadraplegia. It seems that unless someone is a celeberity or famous the interest in PN isn't there. Then too PN is not a readily or highly "visible" disease in many cases so peoples' suffering, while intense is not apparent or recognized.

IMO it's very sad that a condition that afflicts so many and will continue to increase in numbers, particularly w/ the worldwide diabetes epidemic is so underfunded.

Alkymst

I am sure most of these people have some sort of web page (myspace?) Maybe with enough requests we could get them to stand up.

I've written about this subject numerous times--
 

--particularly on the old Braintalk, and been quoted in a number of articles about the subject; sadly, they haven't gotten much distribution.

The new Internet possibilites do hold out hope, though.

I do think a great part of this is that neuropathy is considered to be secondary to many other conditons and not a condition in its own right. Mary Tyler Moore is very involved in promoting diabetes research, for example, but I suspect looks upon her neuropathy as simply a consequence of diabetes.

And, I've made some criticisms of the Neuropathy Association for the way they've gone about trying to get publicity; it hasn't been very consistent or organized.

Take a look at:

http://jscms.jrn.columbia.edu/cns/20...os-neuropathy/

And this other thread we had here about the subject:

http://neurotalk.psychcentral.com/showthread.php?t=9611

Why don't one of you post a letter (Let's say to Montel or to Oprah), write it and explain that neuropathy does not only affect diabetics, but affects millions and millions of people. That we need a spokesperson to help us get the word out.

If I see it on this thread, I will copy and paste it and send it to every single host of every single tv show. And hopefully, we can get the word out!!

Mel