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  • Let's write Oprah

    Hi all. I was just going through this marvelous site and thought that I would mention this. About a month ago I was on the Oprah site, she is one of my favorite talk show people, and there was a place to give show suggestions. So I went for it. I told her about HCM, and how it didn't get any recognition. I was hoping they would pick up on it. What I was wondering was maybe if alot of others emailed she might do a show on it, what could it hurt and maybe we could get this disease some exposure.
    Life is too short to worry about the trival things in life, So live life to the fullest.

  • #2
    Re: Let's write Oprah

    Dear Karen,

    Did you talk about Lisa at all? I think Lisa's story of how she founded the HCMA and made it grow is a total Oprah show staple.

    I would encourage people to write in and talk about the great work of the HCMA and how Lisa has personally helped you.

    take care,

    S

    Comment


    • #3
      Re: Let's write Oprah

      No I didn't talk to Lisa but I believe when I wrote the letter to Oprah I told her of this great site. It was just an idea that came to me today about getting all the other people to write, so that is why I posted it on here.
      Life is too short to worry about the trival things in life, So live life to the fullest.

      Comment


      • #4
        Re: Let's write Oprah

        I love this idea. I think she is an inspiration and does a lot to education the public. This would be great. Who doesn't watch Oprah?

        What is her site? Let us know. I'll be happy to write her. Thanks.
        Millie Acosta
        Bear, DE

        Comment


        • #5
          Re: Let's write Oprah

          I have sent information to Oprah years ago about HCM...no responce. Several people have told me that they have submitted my name for some type of award she gives out...never heard anything on that either.
          BUT the oppurtunity to speak to her about HCM is one that I would LOVE. She reaches so many people and we could educate so many so fast it would be a dream come true.
          Write to her... all of you and lets get the word out!
          Thanks for bringing up the idea!

          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


          • #6
            Re: Let's write Oprah

            Here is a direct link to the page where you fill out the form
            http://www.oprah.com/email/reach/email_showideas.jhtml
            Life is too short to worry about the trival things in life, So live life to the fullest.

            Comment


            • #7
              Re: Let's write Oprah

              I have written to this site a while ago as well. Just sending enough emails could help.
              HCM is the no. 1 cause of death for high school atheletes. Putting some significant data and seriousness of the issue could help. I can imagine their website is probably getting pounded with show ideas.
              Ketan Thanki

              Comment


              • #8
                Re: Let's write Oprah

                I just posted with the Oprah producers...hope they listen!!
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

                Comment


                • #9
                  Re: Let's write Oprah

                  Okay, i wrote in too!

                  Of course i mentioned Lisa and the HCMA and all the great work that she does, but i also tried not to push that angle so hard as to sound like we're trying to get our buddy elected to class president either. I think what will get us a show is the sudden death angle, the silent killer, a rare and incurable disease, claiming the lives of children and adults alike, even those in the best of health, unaware that their hearts were a ticking time-bomb. Families of famous athletes, as well as those of the not-so-famous could be interviewed, screenings and defibrillators could be called for, and Lisa and the HCMA goes on the show to tie it all together with hope and information for the public.

                  Sounds dramatic and overdone? Yes, i know. But that's show business folks. As long as it gets HCM the publicity it needs...

                  Jim
                  "Some days you're the dog... some days you're the hydrant."

                  Comment


                  • #10
                    Re: Let's write Oprah

                    Originally posted by mtlieb
                    I think what will get us a show is the sudden death angle, the silent killer, a rare and incurable disease, claiming the lives of children and adults alike, even those in the best of health, unaware that their hearts were a ticking time-bomb. Families of famous athletes, as well as those of the not-so-famous could be interviewed, screenings and defibrillators could be called for, and Lisa and the HCMA goes on the show to tie it all together with hope and information for the public.
                    Well written.
                    Reenie

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

                    Comment


                    • #11
                      Re: Let's write Oprah

                      Thanks Reenie,

                      I do have to admit that i have a flair for the dramatic sometimes. It's in my nature... but that's a topic for another time...

                      My point is simply this... sometimes, when you want to get something publicized, you have to sell your soul to the devil a little bit... and like it or not... what Oprah viewers (and Oprah staff) really want to see is a teary-eyed mother mourning the loss of her 17 year old son who lost his life tragically on the high school football field, in the prime of his life. A likeable boy who had his whole life in front of him. That's the kind of stuff people want to watch, and advertisers are willing to pay for. But i'll tell ya... if thirty minutes of teary-eyed confessions gets the HCMA even ten minutes of airtime, then i'll sell my soul a little bit for that!

                      Jim
                      "Some days you're the dog... some days you're the hydrant."

                      Comment


                      • #12
                        Re: Let's write Oprah

                        Here we talk about LIVING with HCM...and frankly that does not "sell". People have to hear the scary stuff, the bad stuff, the sudden death issues to open their eyes... SO you have to balance the 2 - tell them about SD with clear facts on risk and treatment as a quick follow up.
                        If I tell my families story... heck how much more sad can you get lost grandpa at 43 - he dies on a Friday night my dad had to miss his HS graduation the following Sunday to go to the funeral! My aunt dies in her early 50's - my uncle is attending an outdoorsman show in Montana and is found in his car in the parking lot dead at the wheel, he was 48. My cousin was in the military and in basic training and had to rush home for the funeral - my sister dies at 36 leaving 2 kids, one with HCM while I am 8 mo preg.
                        Not to mention the runs to the ER for me, my dad and my niece over the years...the days your being normal and then...wait what was that...Oh Shi* my heart - OK What do I do now...Sit down, lay down, call for help? is it really bad, will it pass? Oh I do not have time for this I have something to do, somewhere to go, someone who is waiting on me... Oh well everything must wait - my heart is taking center stage and IT wins...

                        I know I do not speak of it much here but THINK about what this does to a family... Think about how each of us view life everyday based on what we KNOW and have lived through. I talk about it with few tears most days..but I am not made of steal... I have my days where I want to scream "THIS IS NOT FAIR AND THIS IS TOO BAD TO BE REAL!"
                        When the media picks up the HCM story and it soon will - ALL sides of the story must be told - the death, the living and the fight for answers.

                        Just some thoughts...
                        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


                        • #13
                          Re: Let's write Oprah

                          Lisa, you hit a familiar nerve with your Oh Shi* statement.
                          Like a lot of us, been there done that and how many times have you gone to bed at night when your heart is acting up a bit and wonder will this correct thru the night and will I wake up tomorrow morn.??
                          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                          So if you are capable of thought then you are capable of great things
                          Good luck and stay well.
                          Glen

                          Comment


                          • #14
                            Re: Let's write Oprah

                            Glen and Lisa,

                            I had to chuckle along with you about the Oh Shi* statements. LOL. Even before i knew i had HCM (and usually after one of my nights of drinking with the boys), i'd go to bed with my heart tap-dancing in my chest and think 'good lord, what the heck is this?' But in my drunken state i'd usually just lay down and think 'oh well, i'll either wake up or i won't'.

                            Now that i'm off the sauce and know what the heck HCM is, it's a little bit scarier, but for the most part i still just lay down and think 'oh well, i'll either wake up or i won't'.

                            Every now and then it's just plain nice to be reminded that we're all in the same boat here. Thanks!

                            Jim
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #15
                              if we really want to get on Oprah---

                              let's put ourselves in the shoes of her producers.

                              what do they care about?

                              ratings and commercials.

                              why don't we consider the following.

                              Instead of trying to convince some anonymous person on the internet message board, let's try to find a contact, a real live personal human contact with the show.

                              Let's treat that person with the same kind of respect with which we would like to be treated on our jobs.

                              Let's try to show that person that doing a story on HCM would be good for them.

                              Who advertises on Oprah? Are any of the advertisers drug companies with whom we have contact? Are any of the advertisers companies who have lost someone due to HCM?

                              Maybe we can give one of her producers some video of stories already done on HCM.

                              Maybe we can send some newspaper clippings of stories done on HCM.


                              I suggest that we avoid arguing that they "should" do a story on HCM, or that such a story would "have merit."

                              The producers of the Oprah show have a job to do, just like all of us: make money for their companies.

                              let's show them how they can make money covering HCM.

                              Look at her shows. What do they have in common?

                              How does this story tie in to her life story?

                              How does it relate to her producers and advertisers?

                              let's treat them with the same respect with which we would like to be treated on our jobs.

                              People are all the time telling me about worthwhile causes my law firm should litigate. I always ask them how I am going to generate the $125 to $150 an hour overhead it costs my firm just to keep the lights on in my office? If I ignore that economic reality, I put my firm at risk of going out of business, just as happens to the law firms in the movie A Civil Action.

                              Law firms that ignore financial reality go out of business every day.

                              So we need to figure out how to help Oprah make money and get an audience and good ratings by doing a story on HCM.

                              Can someone Do our homework?

                              Look at Oprah's story lines. What issues does she cover? I do not know.... Can anyone research this?

                              Who advertises on Oprah?

                              What are the demographics of her audience?

                              Let's put ourselves in her shoes and see how we can make it good for the Oprah show.

                              I believe we can, if we do our homework.

                              Lee
                              [email protected]

                              Detroit, Michigan
                              Proud father of Andy, Meaghan, and Sean

                              medical research:
                              http://www.ncbi.nlm.nih.gov/PubMed

                              www.vivisimo.com

                              Laugh:
                              http://www.cbs.com/latenight/lateshow/top_ten/

                              Comment

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