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Share your HCM Story with the Today Show

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  • Share your HCM Story with the Today Show

    NBC's Today Show is asking viewers to email in their Second Opinion Stories. Connect to the link below and share your HCM story with them.

    Hopefully we can inundate them with HCM stories, which could result in a feature on HCM.

    http://www.msnbc.msn.com/id/3940587/

  • #2
    Re: Share your HCM Story with the Today Show

    Lisa, think a story about having to fly several thousand miles to HAWAII for a second opinion will catch their attention? LOL

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: Share your HCM Story with the Today Show

      heck yes... that is just what they are looking for.
      I saw the feature this morning and asked Kelly to post the link. The entire feature is about how important it is to get opinions from specialist and if your current doctor has a problem with the second opinion...well in short, find a new doctor!

      Best wishes,

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #4
        Re: Share your HCM Story with the Today Show

        LOL, I'm not forgetting to add the part about travelling to Ohio for the ICD too. I just have to laugh when I'm writing this. Man, this gets awful convoluted. LOL

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment


        • #5
          Re: Share your HCM Story with the Today Show

          I can't get the page to send once I'm finished writing my story. I'm getting an error notification at the bottom of the page. Any clues?

          Reenie
          Reenie

          ****************
          Husband has HCM.
          3 kids - ages 23, 21, & 19. All presently clear of HCM.

          Comment


          • #6
            Re: Share your HCM Story with the Today Show

            Me too Reenie, well i guess it's not just me, i had a good story for them





            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Re: Share your HCM Story with the Today Show

              I got my story to go through this morning. We'll cross our fingers.

              Reenie
              Reenie

              ****************
              Husband has HCM.
              3 kids - ages 23, 21, & 19. All presently clear of HCM.

              Comment


              • #8
                Re: Share your HCM Story with the Today Show

                Reenie
                Did you have to do anything special to get it to go through, i have written mine 3 times and it errors out on me it's getting very frustrating, any thoughts
                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Re: Share your HCM Story with the Today Show

                  Reenie i got to go through finally at least they sent me a reply to say they got it anyway so we'll see what happens, it would be nice if they did a piece on HCM, i think that would help alot to get the word out about the disease. Take Care



                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                  Comment


                  • #10
                    Re: Share your HCM Story with the Today Show

                    Shirley, I was just persistent. I had copied my email and I pasted it back into their form instead of retyping it every time.

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Re: Share your HCM Story with the Today Show

                      Wow i never thought about that i don't know where my head is lately, i think these CCB are doing something to me mental wise anyway, I wasn't like this before i started on all this med, i better go my 3 yr old grandaughter is trying on all my clothes LOL:


                      Shirley
                      Diagnosed 2003
                      Myectomy 2-23-2004
                      Husband: Ken
                      Son: John diagnosed 2004
                      Daughter: Janet (free of HCM)

                      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                      Comment


                      • #12
                        Re: Share your HCM Story with the Today Show

                        I just saw this!
                        I went ahead and sent them my story of travels to boston from Washinton state.
                        i went to the attched site and it came up with the right heading.
                        it returned me a confirmation.
                        I'll have to start watching the show !!
                        Laura Johnson

                        Comment


                        • #13
                          Re: Share your HCM Story with the Today Show

                          Hello to everyone
                          I'm new to this site, and I came across this topic regarding "The Today Show"...well....did they air anything about HCM? No one posted anything after January. Im curious to know if they used anyone's story?
                          Thanks for the update
                          Marlene

                          Comment


                          • #14
                            Re: Share your HCM Story with the Today Show

                            NO go... at least nothing yet.

                            We are gonna keep trying!

                            Lisa
                            Knowledge is power ... Stay informed!
                            YOU can make a difference - all you have to do is try!

                            Dx age 12 current age 46 and counting!
                            lost: 5 family members to HCM (SCD, Stroke, CHF)
                            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                            Therapy - ICD (implanted 97, 01, 04 and 11, medication
                            Currently not obstructed
                            Complications - unnecessary pacemaker and stroke (unrelated to each other)

                            Comment


                            • #15
                              Re: Share your HCM Story with the Today Show

                              Maybe they will do one, since the TV show ER aired something with
                              someone w/ HCM.
                              We could hope.


                              laura
                              Laura Johnson

                              Comment

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