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Lisa Salberg Find out more about Lisa Salberg
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  • Regional Forums?

    We have some individuals who will become "HCMA Regional Reps" in the near future.
    This is a quick poll -
    Would you be interested in having areas of this message board dedicated to your "region"?

    The purpose of these forums would be to allow communications on regional events and other regional issues.

    Your input will help us make the HCMA better for YOU!

    Thanks
    Lisa
    1
    Yes, I would find it helpful
    100.00%
    1
    No, I would not find it helpful
    0.00%
    0
    I am not sure
    0.00%
    0
    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)

  • #2
    Re: Regional Forums?

    I think that would be really neat. I dont know of anyone around here with HCM, and its more personal to talk to someone who you know lives by you. just my opinion!
    ~janelle*
    \"The heart swells at the magnificance\"

    1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

    Comment


    • #3
      Re: Regional Forums?

      Dear Lisa,
      If you need somebody in this area, here I be. Happyto help.
      Burt

      Comment


      • #4
        Re: Regional Forums?

        Lisa,
        I think it's a Great idea! Any way to offer more Support & Info, expecially to somone who is newly diagnosed or considering Surgery. I spent too many years suffering ALONE-no one should have to feel the way I did.
        RONNIE

        Comment


        • #5
          Re: Regional Forums?

          I'd be willing to talk to people in my area.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: Regional Forums?

            Ok - Next question -
            Should it be by state? by region of the country? Lets think about this...
            Your input will help!!!

            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


            • #7
              Re: Regional Forums?

              Lisa, if you want an x-hcmer I will still fight for the cause.
              Midge

              Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
              ICD&Pacemaker 1996
              Heart transplant March 19, 2004 @ Mayo Rochester
              Mom of Kaye.

              Comment


              • #8
                Re: Regional Forums?

                I'm game to help in my part of the world!
                Leon
                God Squad co-moderator
                Nothing is as gentle as strength and nothing is as strong as gentleness

                Comment


                • #9
                  Re: Regional Forums?

                  I think we need one for Beijing!

                  Rhoda

                  Comment


                  • #10
                    Re: Regional Forums?

                    I say region. For instance, I am in IL, but I'm actually closer to Iowa. We could sort of feel out who is close to whom and go from there? For instance, I got to meet SheliRenee when I was in California. That was reallyl great! Her little guy is awesome.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Regional Forums?

                      Would it be possible to do a scatter diagram and see where there are population centers, then draw some sort of boundary around each expanding it a necessary to capture the membership? Rather than strictly geographic or political boundaries because some may have a large population vs. another with very few. You could do geographic or political, but the larger centers would probably require a larger amount of support that could disadvantage other centers due to limited resources. Food for thought. Steve.

                      Comment


                      • #12
                        Re: Regional Forums?

                        I think it would be best setting it up as ‘centers.’ That way people could pick the ‘center’ that is most convenient for their own needs. Also, if they are traveling to a different location on vacation or for treatment, or whatever, they could tap into that ‘centers’ postings while they are there.

                        I just hope it doesn’t detract from the overall board’s postings. I think those postings are vital, especially for the people who first come across this site. Perhaps the centers should be confined to subjects and questions pertaining to that center alone, and of no interest to anyone else. Anyway, that’s my thoughts on it.
                        Burt

                        Comment


                        • #13
                          Re: Regional Forums?

                          I love the idea of having Regional Reps to help coordinate in person with local HCM'ers for treatment, meetings, social gatherings, etc.

                          What i envision is a newly diagnosed member, who's already confused and somewhat scared... preparing for their first trip to Boston or Cleveland for tests and treatment, which can be daunting. What a great thing it would be for us to have someone there with them... pick them up at the airport, help them find their way through town, let them know what to expect, assist them in any we we can... but most of all, just to have them meet another HCM'er face to face. And for those people a little further along who are looking at surgery, a local rep could be invaluable.

                          Regional forums... i have mixed feelings about. I think it would be a great idea as long as it was kept as nothing more than 'announcements only'... upcoming events, who's going where and when, coordination of travel and lodging, that sort of thing. Everything else should stay on the main board. For information sharing, we want to reach as broad a population as we can, and when one of us has a question about HCM, it really doesn't matter whether the answer comes from Boston or San Diego. It's the internet... it's all the same.

                          Dividing up regions will be tough... i see the merit of making them center-based, but on the other hand there's lots of us 'in the middle', or without a major center at all. Perhaps for now, just give each individual rep their own forum to moderate, and add or subtract from there. There's just no way to get it right the first time, so don't worry too much about that. Take your best educated guess, and let the people fall where they may, so to speak. You can fill in the gaps as necessary.
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #14
                            Re: Regional Forums?

                            Thanks for your thoughts and input. The Board of Dirctors is meeting in a few weeks and we will discuss some options, I will report back with out findings!

                            keep the input coming!
                            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: Regional Forums?

                              Well howdy,
                              Anybody visiting Las Vegas who might need my help while here is more then welcome to contact me. I would be happy to do what I can to help. I live in Henderson, but that’s only about six miles from The Strip.
                              Burt

                              Comment

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