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NEWBIE.... They are everywhere!!

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Lisa Salberg Find out more about Lisa Salberg
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  • NEWBIE.... They are everywhere!!

    WOW - what a day! 5 NEWBIES. Welcome to one and all (you know who you are!)

    I am posting this message for a particular reason... and it is not one I have EVER posted about in the past.

    Today was great we helped 5 new members get started on the road to managing HCM and LIVING with HCM. This takes TIME - and I would NEVER cut this very important time out of the HCMA's process. Countless times when I say "OK, I think we have a plan here, do you have any more questions" - I hear - "I feel so much better just knowing the HCMA is here, thanks for answering my questions" or something similar...

    Here is the task I leave you all with...

    WE need to help more people, in order to do so we need to have more people on staff to provide services to all of those in need. How do we get these staff people - we have to pay them. In order to pay them - we need money - a topic I hate to discuss.

    We need people who UNDERSTAND how important the HCMA is to help in these efforts. Be creative... think of ways WE can raise money to help each other.

    Donations are nice and we appriciate every last dollar given - but we really need significant funds to accomplish all of what we need to do to save lives, improve lives and educate the masses about HCM.

    I am VERY OPEN to ideas...lets talk about it...

    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)

  • #2
    Re: NEWBIE.... They are everywhere!!

    make that 6.... I am tired... I am going home!
    Uff Da!
    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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    • #3
      Re: NEWBIE.... They are everywhere!!

      How about some more grant writers to assist in the search for philanthropic monies?

      Some of the "expert" message board people seem to be very good with the written word. I would like to see some core people surround Lisa and the HCMA with their computer skills and writing abilities.

      I would like to offer mine...any other takers?

      Sharon

      Comment


      • #4
        Re: NEWBIE.... They are everywhere!!

        I don't know if I am an "expert" that Sharon is referring to, but I am (I think) a decent writer, and I would definitely be willing to help in this regard.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment

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