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IC Related PR -- Getting the Word Out

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  • hoping4acure
    replied
    GREAT idea Jen...you can count me in. We have got to get the word out!

    Leave a comment:


  • Sarojini
    replied
    Sure, keep the ideas coming Actually I'm going to start another thread asking for ideas for places to write/call.... we can all post there....

    Leave a comment:


  • mich2604
    replied
    The Dr Phil show was doing something on vaginism(spelling?) and they did reply to me about my VV issue, but they were taping that week and it was too short of notice, plus im single and it seemed to me that they were looking for someone in a relationship as they were showing how it affects relationships.

    How about Rachel Ray too- I once saw she made a special meal for a boy who had food allergies. I was thinking maybe she could help an IC patients prepare and IC safe meal.

    Leave a comment:


  • ihurttoo
    replied
    Jen,

    I think this is a great idea! Count me in! I will definately write this time too. Maybe with everyone writing at the same time, we can finally get them to do a show about it.

    Hugs,
    Amy

    Leave a comment:


  • DKB
    replied
    Oprah

    Sarojini, I am a nurse in Georgia that believes, treats, listens, and constantly researches this horrible disease that you suffer from. I have given my input to Oprah, and I hope for all of you that she can be your voice. You all are in my prayers daily. I hope we find a treatment that will take all of the IC patients misery away. Have Faith, it will happen. We are working on it.


    DKB

    Leave a comment:


  • Sarojini
    replied
    Tracey, I've written to all of those places too and haven't gotten a response either (and I was so annoyed about the hiccup girl on the Today show -- they did that but won't face a bladder problem affecting millions). It really, really annoys me when I get no response at all and I often feel like giving up... but then I think, well, if I give up, then FOR SURE no one's going to hear about IC.

    My feeling is that maybe, to start off the new year, we could just do a writing campaign and see what happens. Maybe someone is ready to listen now. *shrug*

    We shall see what 2007 brings in terms of IC Awareness!

    Leave a comment:


  • GriffsMommy
    replied
    Just submitted mine. Thanks for the idea Jen!

    Leave a comment:


  • lnseagraves
    replied
    Hey,

    Great idea. Actually, I think that BECAUSE Womens Day just wrote up an article we might have a better shot this year!!!!

    Here's to hoping, good luck!

    PS, Any and all men out there should write too. Even the little amount of awareness thats out there is generally about women.

    Leave a comment:


  • Claredale
    replied
    I have sent emails to cbs, nbc, Dr. Phil, Oprah, Katie Couric, Today Show, The View and a few others. I never get a response, but will keep trying!! I watched the girl that was on the Today show a few weeks ago that had the hiccups for 3 weeks and how much of a big deal they were making. I know she was in pain, but I sent an email about all of us and our pain and that we would love to have our story told. I gave them this website address and everything.

    Tracey

    Leave a comment:


  • traceann
    replied
    Aye Aye Captain! I'll give 'er all I've got!!!

    Leave a comment:


  • Sarojini
    started a topic IC Related PR -- Getting the Word Out

    IC Related PR -- Getting the Word Out

    Hey all,

    As an Angel of the Airwaves, one of my primary duties is to try to get information about IC and stories of IC patients out there, whether it be in newspapers, on TV, on the radio, in magazines, or anywhere else!

    Recently I've received a couple of requests and inquiries about writing to Oprah's show. About once a year, people on the boards bring this up and we have a small group who writes in with stories and requests for shows on IC -- but, as you all know, we have not been granted this wish and we have never heard from the producers.

    My feeling is that if you all really want to be part of an Oprah show on IC, this year we are really going to have to work HARD. It's become pretty darn obvious that we are going to have to yell louder and be pushier than ever before if you want this to happen.

    This year, instead of just having a few people write in, let's absolutely flood the show's inbox with requests for shows on IC, personal stories, and stories from those who care for IC patients. We need each and every one of you who is capable of writing in to do so, and we need each and every one of you to ask at least one sympathetic friend, family member, co-worker, or even DOCTOR to write in to the show as well.

    You do not have to write a long, drawn out story. You do not even have to know how to write well. All you need to do is write down how you feel in your own words and hit "send." You can be as quiet or as vocal as you want, and you can be as ambitious as you want. Your letter can be short and sweet, requesting that they research IC as a condition and do a show on it because it affects millions of people worldwide but yet no one knows about it. Or, it can be a detailed account of your own struggle with IC and how it affected your life. Plus, your spouse could write in and describe his/her own struggles with your condition... and your friends can too. It's always good to have letters from all points of view.

    If you're ambitious, volunteer yourself to be a guest on the show or suggest someone you think would be a great representative of the IC community -- producers love it when you can suggest things like this, because if they do decide to do a show on IC, they won't have to work so hard to find guests. If you can, provide them with resources they can use to start their research as well -- mention the ICN website, the ICA website, the Survival Guide by Dr. Moldwin. If you like your doctor and think he/she knows IC in and out, suggest him/her for a medical panelist -- you know Oprah and other shows always have doctors that specialize in the disease in question on the show as well as patients. Again, this will ease up their workload and make a show about IC easier to produce.

    Here is the website for submitting ideas to Oprah's show:
    https://www.oprah.com/plugger/templa...lugId=B2100004

    If you really want this to happen, and I'm pretty sure you all do since we talk about it all the time , write! I want to log in in a few days and see that the site has crashed because so many of you have written letters.

    There is power in numbers, the saying goes -- yes, one well-written letter is sometimes all it takes, but a hundred letters from people of all walks of life shows them exactly what we want... that there are a LOT of us out here, that IC affects all kinds of people and their families, and that WE WANT TO BE HEARD for once.

    Please consider participating -- don't sit back and say, "Someone else will do it." What if everyone said that?? This time, BE that someone else. Be that tough, strong person I know you are!
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