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  • 2003 meeting notice

    [2003 meeting notice]

    Author: Lisa Salberg (208.47.172.---)

    Date: 09-30-02 15:41

    This is the 1st announcement of the dates of the HCMA's Annual Meeting!

    Hold June 6-8 2003 open for this years meeting. The meeting will be held at the Westin Hotel in Morristown NJ More information to follow!

    We have averaged about 100 participants in the past...lets try to double that this time! The more participants the better. I will be setting up the agenda and speakers over the next few weeks and I would love to hear what you want covered in this years meeting...Chime in please!!!

    Lisa

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    [Re: 2003 meeting notice]

    Author: Julie (216.181.113.---)

    Date: 10-01-02 14:45

    Lisa,

    One topic to consider for those break-out sessions where we split up by topic is "Women's Health and HCM".

    I know that a lot of women on this board have expressed concern about issues that deal specifically to women such as pregnancy, childbirth, hormones (in form of BCP or HRT) and symptoms during menses. Maybe a review of some recent literature on this topic.

    Another idea may be "How to be an HCM Patient". From diagnosis on, we can get tips on what to ask the doctor, definitions of HCM terms, what all the measurements mean, how to read the test result reports, why an HCM specialist is so important, and maybe a checklist of all the things we should know or find out about each individuals specific manifestation of HCM.

    I'm looking forward to next year's meeting.

    Thanks for all your hard work,

    Julie

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    [Re: 2003 meeting notice]

    Author: Annette (---.neave01.pa.comcast.net)

    Date: 10-01-02 19:46

    Dear Lisa,

    Since I have HOCM, I'd be interested in some info on the obstruction. And since you are holding this one very close to where I live, I'm hoping to be there.

    Annette

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    [Re: 2003 meeting notice]

    Author: Rhonda (24.197.126.---)

    Date: 10-01-02 20:51

    Lisa,

    If not attending , where would one get a "copy" of the what was spoken at the seminars?

    thanks-Rhonda

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    [Re: 2003 meeting notice]

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

    Date: 10-01-02 22:08

    Dear Rhonda,

    When the HCMA had funds availble, they did have a couple meetings taped but there wasn't enough funding to do that last year. The newsletter tries to include some of the info that is covered, but doesn't have room for all of. It takes about a grand to tape the whole meeting.

    S

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    [Re: 2003 meeting notice]

    Author: Steve (---.proxy.aol.com)

    Date: 10-01-02 23:14

    Hello,

    I'm with Ronda on "copy of meeting events". Either I missed a news letter that was going to have some info from last years meeting, or maybe it has not come out yet?

    I know and appreciate how busy Lisa and all involed in HCMA are and want to thank you all so much. Especially this message board, it's our life line.

    I had inquired last year about "copies" for meeting info and understand that money is the problem.

    1) what is the true figure needed to get the video tapes done

    2) I would like to get info to present to a club I belong to, to see if they would donate moneys for these video's

    3) If needed couldn't we start a special fund raiser drive through this mesage board to generate theneeded funds.

    The HCMA membership has grown significantly in recent times so I thnik it would be worth a shot.

    If I could get info and or help with this let me know.

    West coast, Steve

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    [Re: 2003 meeting notice]

    Author: beth (---.nyc.rr.com)

    Date: 10-02-02 10:50

    dear lisa ---

    i'm fairly certain i know how to get your meeting videotaped, edited and duped so it can be distributed to members who cannot attend.

    for free or awfully close to free.

    call me in my office or at home to discuss. i think you still have my number or e me separately to discuss.

    this is definitely one way i'm certain we (michael and i) can help you. still working on others.

    best regards,

    beth

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    [Re: 2003 meeting notice]

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

    Date: 10-02-02 11:14

    Beth your a doll and honestly were goining to be one of my first calls on the topic - I am not sure if it is price wise to use video or DVD these days CD's seem so much cheaper than video.

    It seems very likely that we will be able to pull of a video/CD this year - - but it is not the same as being there sorry to say - - but if you can not be there it is a wonderful tool to learn from you just miss the togetherness part.

    keep the ideas coming please!

    Beth when I get back from the conference I will call you about this.

    ALSO - I think your friends dad called - but I am not sure?? The message I got was from a man with a heavy accent but I could not make out the name or # do you know if it was him? He wanted some information re screenings but thats all I got. If it was not him does anyone else know the mystery caller...please help.

    Thanks to all!

    Lisa

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    [Re: 2003 meeting notice]

    Author: Lori (65.173.17.---)

    Date: 10-02-02 20:12

    Lisa,

    Another session for the teens would be great. I think it really helps them to meet other kids with HCM. Thanks again for all the work you do!

    Sincerely,

    Lori

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    [Re: 2003 meeting notice]

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

    Date: 10-03-02 06:50

    Hey Lori -- - How did your daughter make out - - she got her ICD right??

    Lisa

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    [Re: 2003 meeting notice]

    Author: Millie (---.26.123.177.Dial1.Philadelphia1.Level3.ne)

    Date: 10-03-02 07:59

    Lisa ,

    Jay and I are interested in attending this meeting. I'm interested in learning about any new research developments and findings (of course). Also, I'd like to learn more about myectomy. Jeremy's obstruction has always been severe from inception and you would think that with the high doses of meds he takes this would reduce some, but it hasn't. It seems that this would not be an option for Jeremy because his muscle thickening is almost in a "circular fashion" around the left ventricle. Is myectomy not an option as we're told? Another topic, I want to learn more about is alcohol ablation?

    I'm interested to see number of patients with surgery/ablation? Average age? Appearance of muscle thickening. I have so many questions.

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

    [Re: 2003 meeting notice]

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

    Date: 10-03-02 09:44

    Dear Millie

    There will be postings on the board closer to the date about how to register and attend teh meeting. Joining the HCMA is the best way to get access to all the research and news about HCM.

    THere is no medication that reduces obstruction. Norpace has been found to reduce the gradient, but that is not the same thing as removing the actual blockage.

    Myectomys are used exclusively to cut away the top part of the septum to allow the mitral valve to work properly. No one can tell you over the board what procedures are right for your husband, only an HCM specialist.

    Please read the HCM overview onthe board for a lot of info on the disease. YOu can also read the old postings too. And if you call the office at 973-983-7429, you can talk to Lisa about finding a specialist. She is out of town till MOnday but you can leave a message.

    take care,

    Sarah

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    [Re: 2003 meeting notice]

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

    Date: 10-03-02 14:04

    Millie -

    Ablations are not done on children at this point in the USA. I would suggest you post on the board for other myectomy kids... you will get a great deal of responce.

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

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