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  • the annual HCM meeting 2003

    My husband and I recently attended the annual meeting of the HCM June 6-8/2003. I just wanted to comment on how helpful I found the meeting. I was able to find out much information from the heart specialists that attended the meeting. I also found it very useful to meet so many empathic individuals who have experienced the same issues surrounding HCM. Thanks to those individuals who organized this event.

    Jill

  • #2
    Re: the annual HCM meeting 2003

    Jill, I'm glad you were able to attend. It was nice to be able to ask questions, gather info, and meet others who knew what you were going through. Linda

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    • #3
      Re: the annual HCM meeting 2003

      Jill
      My wife (Pebbie) and I feel the same and it was great to meet you and your husband. I especially enjoyed our experience sharing outside the elevators on our hotel floor. Although I learned much, the meeting and interaction with others with HCM was especially good for my wife. I think she has a better understanding of what many people with HCM go through.I know you traveled a long distance to get there but where else in this country(world) could you get a dinner, lunch and personal presentations from the best in the country(with questions and answers) for $35.00!!
      Chuck B

      An inch is a cinch, a yard is hard

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      • #4
        Re: the annual HCM meeting 2003

        You are all very welcome!
        I think this meeting was the best ever! I was so impressed with all of your wonderful questions to the doctors! I must tell you all something...the doctors were impressed with your questions and just how knowledgeable you all were! This is one part of the HCMA that has a hidden value... Your questions really make these guys think at a different level...then encourage research and therefore make our lives better. The HCMA is a true partnership between patients and the medical community!

        Re the value of the meeting - Our goal is to get you all informed and to get the docs here for you all. I would hate to see someone not be able to come because the event was too much money - therefore the HCMA uses funds raised throughout the year to help pay for the event -
        some #'s
        We collected meeting fees of $3500
        Dinner/Breakfast of $1700
        $ collected for games at the door $450
        totaling about $5650
        the meeting cost the HCMA just under $10,000
        therefore the HCMA used about $4500.00 to cover the costs for the event.
        Our hope is that next year we will have a corporate sponsor of the event and thereby we will be able to do more meetings!

        Anyone wishing to make donations to the HCMA is always welcome to do so! We could sure use a little help in this area...
        Oh the DVD of the meeting - was sponsored by a memeber with a generous gift - the gift covered the taping and will hopefully cover the editing - we need to come up with some extra cash to actually make the DVD's up.

        We are already planning next years meeting...mark your calendar for June 4, 5 and 6 2004!

        Best to all!
        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)

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        • #5
          Re: the annual HCM meeting 2003

          Where?

          Is Orlando still in the works?

          That would be way cool!

          Mary S.

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          • #6
            Re: the annual HCM meeting 2003

            Our annual meeting is always in NJ - the logistics for us to move the annual meeting is a bit overwhelming. HOWEVER if we were able to get a little more funding under our belt regional meetings are very realistic!

            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: the annual HCM meeting 2003

              Lisa my husband works for a company called Welch Allyn Protocol. They make all kinds of medical equipment that you see in your Dr's office to stuff you see in ER. They were featured on one of the major news stations because his branch of this very large company, were making Propaks a high tech piece of equipment that was being used in the MASH units and all the other medical units.

              Any suggestions on how he can approach them for a sponsor-ship?

              I await your response.

              Diana

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              • #8
                Re: the annual HCM meeting 2003

                I will call you directly and we can discuss how we may get them to assist us. Thanks for thinking!!

                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

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