Neuropathy and Neuropathy Association on
NBC Today Show, May 13th

On behalf of our entire neuropathy community, we are pleased to share with you that The Neuropathy Association will make its first national television appearance on NBC’s Today Show on Tuesday, May 13th, at approximately 8:30 a.m. Eastern time.

Speaking on behalf of our members and everyone living with neuropathy, executive director Tina Tockarshewsky will be speaking with Al Roker to highlight National Neuropathy Week and build awareness about the scope and symptoms of this pervasive disease.

The interview is scheduled to coincide with the start of National Neuropathy Week, May 12-16. This week gives the neuropathy community an annual opportunity to emphasize how critical it is that all of us—the general public, healthcare providers, and policymakers alike—recognize the toll this disease is taking on Americans’ health and quality of life.

We are honored that the Today Show is giving prominence to this too long unrecognized disease, and highlighting our efforts to build awareness and work towards a cure.

Please join us for the interview, and please visit http://www.neuropathy.org/ all week long to participate in daily interactive activities to observe this important week.

Thought I would post this for everyone, might be some good info, and obviously good exposure for all of us.

Janna

Wow, I'm setting my VCR. Don't want to miss this.

THANKS SO MUCH!!

Gee whiz....the Today show is nothing but a bunch of fancy informercials now.

Drinking wine first thing in the morning ...on TV.... blech

Nothing but celebrities and "Oprah- like" talk show style.

PN got 45 sec if that. Imagine how many people watching have PN and
don't even KNOW it? Do you think many even understood the plug?
I don't. The PN spokes person got about the same air time as the
wine toast ...how sad is that?

45 seconds , so much time to explain the disease (not). I dont feel so bad now that there was a very short power outage last night which knocked off the timer on my vcr (still in the last millenium).

Sadly, just broadcast here on the West Coast - with that little time was really useless.. I'm sure all its going to get is if someone knows an individual with PN - they might say hey, I've heard of that... just another reason we have to take up the cause and fight harder!!!!!!

Okay, here's my take on the 45 seconds. 'IT WILL DO NOTHING FOR THE CAUSE".

It sounded like an infomercial. You cannot explain neuropathy (and they did NOT did they?) in 45 seconds. They spoke about the Association, but I bet that not one person (who does not have PN), no one went "what the heck is neuropathy anyway??".

Too much time spent on sampling wine, and not enough explaining how painful this condition actually is. To me it was a waste of 45 seconds.

And absolutely not the fault of the lovely lady who was on camera. She was terrific. It simply was not enough time, and certainly not enough information. No one spoke about what it actually was, the various causes, the treatments, etc. I mean, if they wanted to reach millions, they could have had an expert on camera, giving the various causes and latest discoveries on neuropathies.

But on a funnier note, did any of you see the guy flashing the TEE SHIRT, behind Al and the Neuropathy lady??

This guy is from the meetings once a month at the CBS Studios.

We've met him several times. I was watching the tv and I went "Oh, I know that guy, he goes to all the meetings. Now that was funny.

I gather we just have to wait and hope that a 20/20 or a 60 minutes does a 15 minute piece on Neuropathy, and has physicians on it to speak about it.

NOW THAT WILL GET SOME PEOPLE THINKING!!!!

I guess when Oprah gets PN we'll all hear about it!

(Sorry Oprah, but it won't be long now for YOU).

Today Dr. Oz is going to do a "past life regression" !! I'm going to watch that
one.
I had one done and so did my son. My friend who is a social worker and licensed hypnotist wanted to do it in her therapy, BUT didn't want to practice on her
patients....so we were her guinea pigs.
I have to say....it was interesting. (and free for us too!)
I have my own theories on how this works, and why we respond to it.

Here is a link to the Today Show's web page, where they have a link to the Neuropathy Association. http://www.msnbc.msn.com/id/3032633/


Scroll way to the bottom of the page and click on contact. Here is a copy of what I just sent to them:

Dear Today Show,

Many people across the country set their vcr's or tuned in for the announced segment on peripheral neuropathy on the Today Show, Tuesday, May 13, only to be terribly disappointed at what came across as little more than a 45 second infomercial. We believe you can to do better than that for the thousands and thousands of folks whose lives are disrupted and heavily impacted by this condition, of which diagnosis is difficult if not sometimes impossible, and for which there are no "cures."

We really can't wait for a mega-star like Oprah to find out they have peripheral neuropahy (or any of the plethora of other nervous disorders which bring with them pain, lack of mobility, or severe disability) before the public is made aware of something that each of them could face someday. Most of us understand that the sooner our conditions are diagnosed, and whatever treatments are available are begun, the less damage and heartbreak we are likely to incur. And to do that viewers needed a little more than a superficial 45 seconds sound-bite.

Please consider a follow-up show, perhaps with a guest doctor (or better yet - neurologist), during which you might also interview in person one or two sufferers of this puzzling, disabling, and sometimes excruciating condition. Until the media is willing to give more time to important issues such as peripheral neuropathy and other lesser known health conditions than they do to the president's daughter's wedding or a cure for cellulite, viewers will never be given the information needed to help them with learning to take control of their lives.

Show us what the Today Show can do when it really wants to shine! We will be watching!

Sincerely,

D _______________


I bet if more of you sent an e-mail, they just might listen and consider that the need was not met with their 45 seconds of airtime. . . .

That NY chapter has many good people who could fit that bill.

I hope NBC answers you.

I started watching at 8am, so as not to miss it. It was an appalling 45 min.
I haven't seen Today for years....I watch CNN.

It was ironic that they were toasting Jay Leno's replacement with wine at
8:25am! With PN to follow!

I bet others will be writing too~

First of all, you're a genius.

Second of all, I'm writing them as soon as I finish posting this.

Thanks for a great suggestion!!

Way to go!

Melody