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Summit 2 - a report from Lisa

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  • Summit 2 - a report from Lisa

    [Summit 2 - a report from Lisa]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-07-02 12:35

    Well I am back home and feeling rather inspired by the events of the past 3 days, only to find more bad news on the message board... 2 steps forward one step back I guess.

    I am not feeling great today (not HCM related...good old upper resp. infection!)- -so I am going to be brief with my comments.

    We have set up an AMAZING members meeting for June 6-8 2002 I would encourage all who can attend to attend!! It will be in NJ at the Westen Hotel in Morristown.

    We have the following speakers/centers who are excited to attend and share their knowledge with us!

    Of course Dr. Barry Maron will be there!

    Dr. Martin Maron - TUFTS

    Dr. Harry Lever - Cleveland

    Dr. Mark Sherrid - St. Lukes

    Dr. Robert Pensack

    Representitive from Mayo Clinic - to be announced

    Representitive from the Harvard genetics team - to be announced

    I am waiting to speak to two more people - which will balance the program to include Pediatrics and electrophysiology

    This is going to be the best meeting yet.. I can not say it strongly enough...if you, a loved one, a friend or a patient has HCM - you really must attend! Further if you have lost someone to HCM and want to learn more this is the appropriate place for you as well.

    RE the Summit itself - Dr. Maron and Dr. McKenna did a fabulous job of creating a well balanced pogram that gave the complete picture of what we know, what we do not know and what we need to learn regarding HCM.

    All the speakers we wonderful and the participants made the event even more interesting by adding their expereinces and wonderful comments. Those of you who were in attandance can please chime in with your thoughts. I was happy to see several HCMA members in attendance and it was wonderful meeting all of you!

    It was great to see members from as close as St. Paul to as far away as Italy!

    I will give more information later..

    Best wishes to all and thanks again to Dr's Maron and McKenna for everything...not only the Summit but for their efforts on behalf of all of us with HCM!!!

    Thank you from the bottom of my heart,

    Lisa Salberg

    President, HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Summit 2 - a report from Lisa]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 10-07-02 16:22

    The Summit was fantastic! Lisa delivered a wonderful presentation to the group on Saturday, about the HCMA, goals, accomplishments, membership, , etc. She had the group. Was this warmup for American Heart International Conference next month? HCM and potential disasterous consequences was the underlying theme, but many other conditions were covered. The great thing was how so many were working together to find ways to overcome and/or conquer the disease and its implications. Sharing their knowledge and experiences to enhance one another's research findings can only enhance treatment options and quality of life for all those affected individuals. It has been 4 years since the first Summit was held, and many of the same issues are still being debated by the experts, but so much progress has been made. Everyone can be looking forward to the next newsletter and esp to the next annual HCMA meeting in June. Great job, Lisa. Hope you're feeling better real soon. Hope we see some postings from those other HCMA members who were able to attend. I enjoyed meeting and talking with so many. Linda Price

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Summit 2 - a report from Lisa]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-09-02 00:43

    Dear All,

    This was my first time at a real medical conference. It was very refreshing to see doctors all struggling to figure out just what to do for US!! Yes, they all sincerely want to know how to treat HCMers the best way possible. Now, they don't all agree all the time on what that is, but they are working on it.

    I'm very excited about what the future holds for HCM and the HCMA!!

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

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