National Morning News Awareness attempt

Montel has MS…I wonder about him ?

I will email you.

Michael, I agree with you that there should be more awareness out there. Any idea how to go about it? Contact the TV stations with a collection of stories including newspaper articles – there are some references to them there on the forum.

Please, PM me with a link to the enzyme treatment. Thanks.

[B]Well Montel, Oprah and all the rest of the show hosts have been contacted over the years by all of us. They don’t even bother to send a No Thank You to any of us. I have even contacted all the major news stations and the same thing, no answers.

Give it a try, but I’ll guarantee you will get no answers from any of them.

Sad but oh so very true.[/B]

Unfortunately ditto Donna. It’s very difficult to try to build awareness, I wish it werent though, but the best we seem to get is a story on ESPN or the local sports news about someone like Mike Sutton (normally focusing on it because of the celebrity). Some on the forum have been contacted by some TV organizations like Discovery Health (I think Perry was one), unfortunately nothing has come of it.
Every now and again a local paper will do a story on GBS and report on the patient, however they generally get the facts wrong.

I really dont mean to sound negative, I’m really not but it is so difficult to keep enthusiastic about it sometimes after years of trying. Good thing though, on shows like House, GBS has been mentioned a few times 😀 .

The Neuropathy Action Foundation is cited as a resource in IGLiving magazine…I’ve looked it over and their site does map out the ways one can speak up for neuropathies, CIDP and MMN. The founder actually has MMN…
Read the site thoroughly and start writing letters?
NORD [National Organizations of Rare Diseases] is a good resource, I am sure this board’s parent is a member. Keep in mind tho, that NORD’s constituency covers a LOT of rare diseases. My feeling is that we are in very good company tho!

I believe that WE are the best spokespersons at least on the local level. That is something we could all do without a lot of travel and stress… Like how some women’s clubs or groups like the Lions Clubs are looking for speakers…get that practice and experience and who knows?

Unfortunately it is so difficult to get awareness out for what many believe to be “orpan” illnesses. In other words, not enough people have them, so not that many care about them. I gave up telling people I have CIDP long ago, now I say Chronic GBS. Even that doesn’t ring a bell around here, even with most nurses. My son has done two long articles for me for our local newspaper, but I am just lucky that he happens to be a jouralist for them. Even though I know so many people read them, now they don’t still know what I have. I wish there was more we could do for awareness, but until it strikes someone in their own family, no one seems to want to know too much.

Hi MAC34,

I was 20 when I was dx with CIDP. That was 4 years ago, and at my worse I was on a ventilator and a feeding tube for 2 months. I had to relearn everything from how to feed myself to walking again a few times over the last 4 years due to relapses. I had a great photography job I loved and was in my 3rd year of college. Since I have become ill I have not been able to work and am also a stay at homer. CIDP has completely turned my life upside down and if you ever find an outlet or need another voice to step up with you, I am here for you. I think the awareness of CIDP deffinitely needs to be raised, and even though others say it is hard it is not impossible, I am sure we could still find some way to raise our voices.

You are welcome to e-mail me or private message me anytime. Take care and good luck on this mission.

Emily

Mac – You might want to touch base with our good friends at GBS/CIDP Foundation in regard to national coverage of the disease – I am sure they have a record of contacts they have made as well as efforts by patients to do the same – seems that I remember Jethro being selected by “Medical Mysteries” on the Discovery Channel last year, maybe the year before – I have no doubt that these people are working constantly to get the word out on our behalf – they would probably really appreciate your interest and energy working along with them. Bonney