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Why can't we have major media support?

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  • ihurttoo
    replied
    Bumping This Up! Please Sign This Petition!!!!

    I just now saw this petition to help fund IC research. I hope everyone sees this and will sign it too. My husband, mother, and myself have all signed it, and I will also ask everyone else I know to sign this as well. It only takes a moment, but it is so important for all of us! Thanks, Amy
    Last edited by ihurttoo; 04-08-2006, 07:50 PM.

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  • KarlaUrsula
    replied
    Pamela Sue Martin of "Dynasty" had IC, and although I didn't see it, she was on TV about it. That's what I read somewhere, anyway. Karla

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  • fmcilwee
    replied
    I was wondering the same thing about Oprah, as many shows as she does, You would think she would try to help us This disease is very degrading physicllay and mentally. [quote] <hr></blockquote>

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  • ragsmom
    replied
    Liz2,I can appreciate where you are coming from re:Media to IC.
    I had been dx with IC 3 yrs ago and I have been lucky to be able to keep in check with meds and diet.Not saying that I do not have a flare or bad days,I do.
    Terri,has given you some good info re:IC Fund Raising for which I have active in but not lately but I will be back to help Terri
    in what ever way that I can but we need others to get involved with us.We cannot do it ourselves.
    Now back to the reason that I have replyed to this post re:Jerry Lewis' Telethon.
    I felt the same way as you until I was Dx with Ocular Myasthenia Gravis/General Myasthenia Gravis.
    This disease is one of the FORTY neuromuscular diseases that is in the Muscular Dystrophy category and the funds are shared between all of the forty neuromuscular diseases.
    Ocular MG deals with the eye and facial muscles(Ptosis...drooping eyelid,sometimes to the point of the covering the retina.
    My right eye goes to the outer part of the eye.My vision is sometimes blurry/double vision.I become very sob when walking because the diaphragm muscle is weak and sometimes a crisis may occur when you have to go to the ER(so far I have been lucky)
    The muscles in my arms,legs,hands become weak.I have fallen twice so far because I foolishly tried to do more physically then I should have been doing.I need rest frequently when I feel tired but it is hard to accept that I have this disease which may or may not put me in a wheelchair in a year or so.I will fight this.
    Now you see that all of that money does not go just to MD.
    They provide wheelchairs and other equipment that may be needed but cannot afford to pay.
    So now we need to deal with IC and bring it forward to the Public.Any ideas are welcome but we have to realize also that this country is in a crisis and the media is now focusing on that.But we will keep trying!!
    I pray for peace and one day we will be able to eradicate all of the diseases with possibility through Stem Cell Research.
    To everyone "United We Stand,Divided We Fall"
    prayers and gentle hugs to all with Chronic Illnesses. delores [email protected]

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  • ldwall
    replied
    From recent up close and personal experience with the media I can tell you it won't happen until it becomes news. It won't become news until someone famous gets it, a major public relations campaign gets started, or there is a major break through in IC treatment that also has a good public relations team behind it. We won't get on a talk show because the hosts (montel etc) don't ever get to read that kind of mail. It goes to a pruducer that puts it in a pile of story ideas, then a group of producers decides on a show based on the ratings it needs to get. If we want major media support we need a public relations campaign plain and simple.

    Sorry to burst everyones bubble, but unfortuantly there has to be something sellable to make it news. I am news because everyone wants to feel like they are related to sending someone to war, in reality they ain't doing a damn thing, I am.

    The solution here is to try to find a way to do a public relations campaign, or to join one already in existance and to use that to get the word out.

    L

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  • Nina37865
    replied
    I agree! We need media support! I have been reading Dr.Moldwin's book and he says that IC is even more common than Parkinsons,muscular distrophy and Hemophilia!
    Why then, do we suffer for years with no diagnosis? Nina

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  • marie22
    replied
    Discovery Health did a show on chronic pain and I watched it hoping they would mention IC. They mentioned Fibromyalgia, chronic headaches, and endometriosis but, not IC. IC is not that rare. A lot of people have it. I don't know why nobody ever talks about it at all. It makes me so mad! Maybe some of the clueless doctors would recognize IC more if they would do some shows on it something! I think I will write Discover Health too. We need someone to recognize this painful disease!!!

    Marie

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  • Jazzy Baby
    replied
    I just wanted to let you know that you can email discovery network health at..... [email protected]

    I just wrote them a very long letter, and I told them that if they needed anymore info to come to this website!!!! I say everyone blow them up. Maybe this one will work, eh!!!!!

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  • Patrice
    replied
    Has anyone thought of contacting Discovery Health Channel? They have 24 hours a day of medical stuff. Maybe they would do something about IC.

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  • Katrina
    replied
    Thank you very much Terri for telling us about he petition. My husband and I both signed it and I sent to site to good web buddies. Thank you.

    Faith, hope, and love,
    Katrina

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  • ladysquirley
    replied
    Terri,
    I want to thank you for telling me about the petition. I am happy to let you know i signed the petition!!!!
    Hugs
    I hope you have many pain free days!

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  • Veronica
    replied
    I think we all have to keep writing, venting, talking, etc...about IC. Not just to our fellow ICers, but to the world.

    I agree with some of the above statments that on the rare chance IC is mentioned it is made to sound like it's easy to fix.

    I just submitted and IC article to a local health magazine, so if I hear back I'll let you know.

    I'm also con't to collect info, and stories for the IC book I'm working on.

    One ICer in California has been great about having her large support group fill out questionares for me. And Thanks to many of you who have e-mailed me your stories!

    Veronica

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  • liz2
    replied
    Thanks for telling us about the petition; I signed it too.

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  • buffy
    replied
    Thanks for telling us about the petition. I am proud to be number 1328, and hope others will follow.

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  • icnTerri
    replied
    Has everyone signed the Petition ?

    We also have LOTS of fundraising activities and letter-writing campaigns we are working on over at www.icaprilshowers.org, and have raised $550 for research so far.

    Just thought I'd throw in a bit of good news,
    Love,
    Terri
    I believe it'll have to be us.
    ~*~Wishing you many moments of peace~*~

    Leave a comment:

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