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IC PR -- Ideas other than "The Oprah Show"????

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  • #16
    Thanks Jen! Also, Jill and I are going to coordinate an IC Awareness Day and march for IC awareness etc...

    One thing people may not know is that I can personally design and personalize the shirts, pins, buttons, bumper stickers, and more....with personal text, pictures, whatever you need. I'm also thinking up new designs for the store.

    email me at [email protected] and put The IC Team in the subject line to order your personalized merchandise.

    Don't forget, 10% of all profits go to The ICN!!! Let's support each other and research!!!
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #17
      The View

      Thanks Sarojini for getting this going. Besides Oprah I have emailed The
      View. About once a week or so they have a segment towards the end of the show where they talk to someone about a condition they have. Yesterday it was Huntingtons and a couple of weeks ago it was Celiac (Elizabeth has Celiac).
      They have done whole shows on Autism and Depression.


      Go to http://abc.go.com/daytime/theview/index.html

      Below their pictures click on ask the Viewmaster and put the info into their form (kinda like here).
      This would be a great way to get women who watch tv in the morning.


      Symptoms since '86 starting with frequency(told I had a small bladder)
      Diagnosed with medium IC in 2004 when pain started

      Medications:
      For IC Elavil 50 mg - Atarax 50 mg - Fentanyl 25 Patch replaced every 72 hrs

      For HBP Norvasc 5mg -Diovan 320 mg

      For Depression Wellbutrin XL 300mg

      Sinus Problems Flonase 2x daily-Alegera D when needed

      And Now Fibromyalgia


      Have Tried Elmiron (made me sick and hair loss)
      DMSO and Heparin instills no help
      All and every urgency pill
      Trileptal, Neurontin, Tramdol did nothing
      Cymbalta which made me dizzy and flushed
      Lyrica gave me night terrors each night a different family member died very vivid now I know how they got the name night terrors

      Comment


      • #18
        I think everyone has some really great ideas! I'm excited about helping out with any of them. I to have written Oprah several times and nothing. I think someone typing up a standard letter is also a good idea, then maybe at the end of it you could briefly write in alittle about your own personal story. But I think a well written general letter describing IC and how devastating it is would be a good idea because I'm not the greatest writer myself. I agree that we should all bombard one show each time with this letter, I think maybe that would be better at getting someone's attention. I remember watching a few times on Oprah her doing a story on someone that she said kept bombarding them with e-mails and finally decided to hear their story. So lets not give up! I like many of you feel desperate to get the word out and will help in anyway to do that. So please let me know what I can do to help.

        Kari
        Kari

        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

        Comment


        • #19
          Hey all, thanks for your replies. I am thrilled so many are interested in participating in our "Let's Bombard Them With IC" campaign

          I see most of you are voting for a form letter, so... we'll do that. I would suggest, however, that somewhere on the form letter that is created, you add a little bit about your own personal struggle with IC -- that you personalize it at least with a few words. It can just be a sentence or two. That way, the producers can see the variety of symptoms -- and the letters become more powerful when they are personal.

          If you like, I will probably be able to produce a form letter in the next few weeks. When I do, I will post it on this board under "Form Letter."

          Once that is done, we can decide which shows we would like to do, and then decide on dates to bombard them with letters. I will need some help, however ... if you have posted a show you'd like to write to but have NOT posted the contact information for that show yet, please do so. Unfortunately, I don't have time to research all of the many, many shows you all have suggested.

          (Thanks to all who have already posted contact info -- I am keeping a record of these links, etc and will later post the whole list as a separate thread so they're easier to find.)

          Thanks guys, and I hope to get the form letter finished soon so we can get started
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #20
            I think a form letter is a great ideal... However, If I got a bunch of form letters at my desk, I would read the first one, then the first sentence from the rest. I would NEVER get to the personal stories at the bottom. I think the personal stories need to be at the TOP of the letter with a strong description of the disease for the rest of the letter. This may get their attention a bit better. Just a thought.

            btw, I will be willing to help. If I ever get a dx!
            ~Diane
            dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

            Medical History:
            c-sections: 1988, 1991, 1997
            Viral Arthritis 1998 (Like RA, but went away!! )
            Pterygium & Dry Eyes since 2005
            Hysterectomy (Fibroids) 2006

            ~~~~~~~~~~~~~~~~~~~~~~~~~

            Me & Jerry ~ Sammy & Ryan
            ~~~~~~~~~~~~~~~~~~~~~~~~~

            Comment


            • #21
              what about readers digist and guide post?? guide post seems to have many stories..
              Angela aka sleepyangel30

              Comment


              • #22
                Count me in too. I want info regarding a form letter too. I think that idea is great. I too have emailed Oprah, with no response. Maybe by flooding these different media places, it will trigger a response from them. This is great! I am so excited. No one I have every told I had IC has ever even heard of it. By getting the word out maybe we can have some progress on funding/curing this life-altering disease!

                Robin
                The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                Meds:
                IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                UC: Asacol

                Comment


                • #23
                  Count me in as well!! I think "Operation: Bombard Them With IC" is a positively awesome idea. Haha. As for the letter, I think that is an effective process but I think the personal bit of information (of the letter-sender/writer's story) should be at the top. I was wondering with this "letter" would be an actual letter on paper or an e-mail. I was also wondering whether everyone is focused on contacting talk shows or published magazines and newspapers also.
                  When it comes to developing a date to send letters to each show, magazine, or newspaper, I think it may be more productive if there was a calendar design with each show or publishing company assigned to each day (...well I don't know if there are enough for each day but I think you know what I mean). That way if the publishing company or talk show does not respond to the letters the first month we will contact them once again (on there day), the second month (…and continue so on). Does that make any sense?? Does it seem logical??? Sorry. I am not very good at explaining my thoughts. Hahaha.
                  I just hope that educating others and getting the word out about IC will help others to understand; maybe it will even lead to fundraising for a cure!!!!!!
                  IC Awareness

                  Comment


                  • #24
                    http://en.wikipedia.org/wiki/Talk_show_host
                    http://www.answers.com/topic/list-of-talk-show-hosts

                    Oh! Here are links for lists af talk shows. If you want me to find a list of magazines, newspapers, and the contact information I would be glad to. If you are wondering, I don't expect to send letters to every show on the list (...I don't plan on sending one to Jimmy Kimmel...hahaha).
                    IC Awareness

                    Comment


                    • #25
                      Awesome! Do you want to PM me and I can coordinate the outfits and stuff when we do get on a show or shows? We can give them out to the host/ess, members of the audience, etc...etc... lots of possibilities here. Same thing with buttons, mugs, etc. Those are things we could hand out as well. The buttons are the most affordable in bulk. IC Teddy is another good one that should get attention.
                      http://www.TheCraftyEwe.etsy.com

                      Comment


                      • #26
                        Wow... sounds really great about the outfits, Moonheart!!! We should definitely do that!

                        I'm sorry that I am slow on the form letter -- I'd planned to have it done by this weekend, but I ran into some unexpected overtime at work this week. However, it is on my mind and I will get it done, hopefully by next weekend.

                        As for letter or email -- it is your choice. Probably, most will use email, since it is easier these days, and many media outlets prefer that anyway. TV shows are great to do as a giant group because they're seen nationally. Magazines are the same way -- they have a national readership, and tons of people pick them up at the store, read 'em at the doctor's office, subscribe, etc.

                        Newspapers are a little different, unless we do USA Today or something. Local newspapers are a GREAT start for those of you who want a little practice dealing with the media first. As I've said, by writing to my own local paper, I got to tell my IC story to a reporter and the article ended up on the front page of the Health Section

                        As for a calendar, the IC Network does have one that you can look at (right now it has things like support group meetings, etc listed on it -- but perhaps with Jill's permission, we can get our "Pester the Media" Days on it too )

                        Thanks for the links... these are really helpful, tbn!!! Moonheart, please let me know when your new designs are up -- I would like to buy a shirt ahead of time
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                        Comment


                        • #27
                          Hi Jen!

                          Please email me with whatever you want on your shirt, if you want the new design, or your own personal design, whatever you want. Also, remember there are jogging suits, mugs, buttons, hats, bags, teddy bears, doggie shirts, baby onesies and bibs, etc.. so I can show you what your design will look like on any of those.

                          Another really awesome thing is the stamps. I can put any words, designs, the IC Awareness ribbon, etc. on a page of stamps and you can purchase them for your letter writing campaigns. Everyone should have these and use them in any letter writing you do to look more cohesive and organized.
                          I'll actually get those up tonight so you all can start purchasing them first thing in the morning k?

                          Hugs to all!
                          http://www.TheCraftyEwe.etsy.com

                          Comment


                          • #28
                            I was wondering where we are on this thread? Have we come to any decisions as to when and how we are going to bombard these shows? Please keep me updated, I really want to do this too! Thanks,

                            Kari
                            Kari

                            I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                            Comment


                            • #29
                              Hi Kari,

                              I have the store back up and running and am working on a book and new designs so that we can have a uniform look. I haven't talked to Jill yet because she's had such a rough month (or two) and am just waiting for things to settle down a bit and she can call me when she feels up to it.

                              If everyone who is a member of this forum would just buy one tshirt, it would provide a much stronger base for me to work off of. I am prepared to get out there and lobby and everything, but I need to be able to have the money to do it. Even simple (not) things like gas money I can't provide just on my own. I really need it to come from the sales of the items in the store.
                              , God bless you all who have purchased!)
                              edited to add~there have been a few more sales! God bless you all!
                              Hugs to you all!
                              Moonheart
                              Last edited by Moonheart; 05-10-2007, 11:27 PM. Reason: added details
                              http://www.TheCraftyEwe.etsy.com

                              Comment


                              • #30
                                Here's another section in the IC Store called The Butterfly Garden. I'll be adding more as time goes on. 10% of the profits from these products still go to the ICN and the rest will go towards supporting my efforts in IC Awareness.

                                http://www.cafepress.com/the_ic_team/2966523
                                http://www.TheCraftyEwe.etsy.com

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