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.

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.

--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

There is one wealthy socialite who has a huge fund raiser every year,
when my brain fog lifts and i remember who it is,let's think about
that letter writing they all have web sites. Mary Tyler Moore already
does a wonderful job raising money and making our so called goverment
aware of a cure for Juvenile Diabetes. Johnny Cash mentioned PN just
before he died,but seemed very confused about it. Perhaps we could get
his children to speak up on Larry King. Sue

are running ads in the magazines. This is the drug, and its website:
http://www.lyrica.com/content/main_h.../main_home.jsp . Its a variation of Neurontin .

When my PN started, four primary care physicians I saw in a row had no idea that there was any known condition with my symptoms of burning feet with numb areas and areas of extreme pain and aching. Brilliant as they were, the first three didn't even do a neuro screening. Instead they suggested tranquilizers (Librium?) and/or referral to a psychiatrist. They refused to send me to a neurologist. The forth, bless him, didn't know what was wrong, but he did a neurological screening and referred me to a neurologist.

Then Neurontin for PN started to be pushed by the drug companies. The drug salesmen educated the doctors and now most doctors are familiar with PN as a condition. That's a pitiful route for medical continuing education, but there it is.

As the boomers age and PN gets more common, it will pay big pharma to start running TV ads. THEN the word will get out to the general public.

Was reading through the old thread from this topic back in December and came across this from KMEB

Just came across this site - worth a serious gander - not only the basic info about PN, Ins. issues etc - but most improtantly for this thread - a section on advocacy - how important it is for all of us to get involved in raising awareness of our needs - and even specific information with "how tos" - how to work with and speak to media, govt officials, etc........ check it out!

http://www.neuropathyactionfoundation.org/index.htm

There is actually a function coming up on June 26 in San Francisco, California. Take a look.

Has anyone given thought to writing such a letter? Does everyone agree with Mel's suggestion?

Nancy