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  • International HCM Summit

    [International HCM Summit]

    Author: Elizabeth Murphy (---.dsl.mindspring.com)

    Date: 10-15-02 12:47

    Hi to all

    I attended the International HCM Summit in Minneapolis the weekend of Oct.4-6. It was great to see Lisa, Sarah,and Linda there, and to meet a few new friends.

    There were few of us who were not in the medical profession in attendance, but I found it extremely interesting and informative, and at times I even found myself nodding my head in agreement with the lecturer. Dr. Maron did an amazing job of organizing this conference and making it happen (it was postponed from last Sept. due to the events of Sept. 11) and everybody associated with HCM owes him a debt of gratitude. I was disappointed that many,many more cardiologists weren't there- if only more cardiologists had the wealth of information presented there then we would all be so much better off. There were great debates on key issues like risk factors, ICDs, and septal ablation. It is truly astounding how this disease manifests itself in so many different ways in different age groups and that even the true experts still have no answers to some of our dilemmas and questions. Lisa gave a wonderful presentation about the HCMA and brought home to me yet once again how invaluable this organization is and how much we all owe her for her tireless efforts.The conference gave me hope for the future and more confidence in the knowledge that I have, but still very scared for the course of the disease in my family.

    Elizabeth

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    [Re: International HCM Summit]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-15-02 13:44

    Out of curiosity ... were the MD's able to provide reasons behind their different beliefs? If you don’t mind, I welcome a reply email to [email protected]

    with some of the information you received (particularly regarding the septal ablation procedure.)

    I assume the debating is because the condition & treatment options are still considered “new.” I think Lisa’s posting about genetic testing is a crucial beginning in helping our doctors/researchers find the information/answers they are looking for! If we can get 500 or so HCMers to provide their blood--DNA, we might get somewhere. If the medical world is lacking facts/data ... then lets give it to them! Whatever it takes … we must unite for the advancement of HCM treatment, advocacy, education, prevention, awareness (screenings/fund raisers), etc. Sorry for babbling … refer to http://www.hcma-heart.com/messages/r...&i=4695&t=4695 if you haven’t read or responded to this posting! Consider sending this link to your friends & family members! ~ Erica

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    [Re: International HCM Summit]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-15-02 13:48

    PS- Elizabeth ... thanks for sharing!

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    [Re: International HCM Summit]

    Author: Lisa Salberg (208.47.172.---)

    Date: 10-15-02 17:23

    Elizabeth,

    You are 100% right Dr. Maron did a wonderful job and I can not thank him enough! Dr. Mckenna, and the rest of the faculty did a great job and it was the open sharing of ideas and concepts that made the even valuable.

    Erica - debate on issues varied so much from simple terms to how much alcohol to use in ablations, what the meaning of obsturction is and Dr. Elliots favorite topic ICD's! So many views,,,so little time!

    Thanks for sharing your thought Elizabeth!

    Lisa
    NOTE: This is a post from the previous forum message board.

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