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August Message from Lisa

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Lisa Salberg Find out more about Lisa Salberg
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  • August Message from Lisa

    Hello,

    I just wanted to give you all a little update as to what is going on here at the HCMA and some personal information as well!
    I know I have been quite on the board for a week or so…Do not think I have forgotten about anyone!
    August has been full of events in my family, most of which are good! As you may have seen on the board my niece Stacey received her 1st ICD about 2 weeks ago. We traveled to Boston for the device, and timing being what it always seems to be in my family …was less than perfect…we hit the blackout and instead of taking the train it was a 5 hour car ride (each way!). I did get to listen to a good book in the car and Stacey was on painkillers so it was really not so bad
    Well within a week it was time to get Stacey and John (my Nephew) packed and back to school. As anyone who has been through the back to college madness goes…nearly everything you need for college that could have been purchased or organized all summer long waits until the day before you leave! Miss Becca returns to school next week and has been in camp… counting the days until school starts and would prefer it to be sooner than later (yeh… I know she is a strange child!)
    During the madness of a full house for the summer my long awaited remodeling of my kitchen started in June and is wrapping up this week (God willing). My kitchen was original to the home…which was built in 1968… the avocado green sink, stove and range had seen there better day… I was shocked each time I used the oven because it still worked (although you could never be sure what temperature it would really cook at!)
    Now the cabinets are correct….after 2 errors, the floor is in, ….and now we are waiting to hook up all the appliances and tile the back splash….which I am taking on as a little project ..Just for fun…I know I will regret it later…but I did one 10 years ago and it was rather fun.
    So that in a nutshell is my personal life since the meeting!

    Now for some HCMA News!
    I have been working with a mentoring program, thanks to the Medtronic Foundation. A woman who has run an organization similar to ours is working with me to help build the infrastructure of the association. You will see some great changes very soon!
    Kelly and I have the office running rather smoothly and are on a very good schedule. The 1st HCMA eNewsletter is nearly complete and should be in your email boxes with in 2 weeks. Once we have the system for eNewsletters set you should receive them at least once a month if not more often!
    Our Fall plans include our annual trip to the American Heart Association, this year it will be in Orlando…HEY you Orlando people…time to party. Lets start making some plans…any volunteers to help organize this???

    FYI last week we had 6 new members join! Never a dull moment at the HCMA!

    Best wishes 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)

  • #2
    Re: August Message from Lisa

    Originally posted by Lisa Salberg
    FYI last week we had 6 new members join! Never a dull moment at the HCMA!Lisa

    Does that include me

    Comment


    • #3
      Re: August Message from Lisa

      Lisa, let me know how I can be of service! Being that Disney still has not found another position for me yet I have lots of free time on my hands! Well, other than school.

      Mary S.

      Comment


      • #4
        Re: August Message from Lisa

        Hi, Lisa -

        I'd be happy to help you out here in Orlando! I own a home based business, and my schedule is flexible.

        The HCMA has been such a great help to us - I'd love to have the opportunity to give something back to you!

        Let me know how I can be of service!

        Karla

        Comment


        • #5
          Re: August Message from Lisa

          Well... Disney crowd!!! why dont we pick a night for dinner somewhere around the conventions center. I can see if I can grab a doctor or 2 to bring with us.
          Let me know where you think we can get together and I will let you know what nights are best in the next few days!

          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


          • #6
            Re: August Message from Lisa

            How awesome would that be to get to see more people! There are tons of places to eat at around the I-Drive area! It all depends on what ya want to eat! I'm not too keen on where the best places to eat are in that part of Orlando. I am still trying to get to all of the Disney Retaraunts. Anyhow, my schedule is kinda empty right now so just about any day is a good day.

            Mary S.

            Comment


            • #7
              Re: August Message from Lisa

              I Think November 8th would be the best day - It is a Saturday. Any suggestions on location???

              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


              • #8
                Re: August Message from Lisa

                Lisa,

                It's not really a question of location... It's more of a question of what kind of food do we want? There are probably over 100 good restaurants in the convention center area! (examples in no particular order: Seafood, Steakhouse, Chinese, Mexican, Caribbean, Japanese, Indian, Hooters ...)

                Let me know and I can get a list of the better ones.

                Matt

                Comment


                • #9
                  Re: August Message from Lisa

                  Tampa's not too far away -- I COULD drive over...

                  Bill

                  Comment


                  • #10
                    Re: August Message from Lisa

                    well if it were a "male" version of Hooters...well maybe
                    Seafood is always good with me! (unless I am in Cleveland...but thats a story for a different posting )

                    Tampa is not far...Bill I think it would be great if you could make it... we could use the time to "plan" some stuff!

                    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


                    • #11
                      Re: August Message from Lisa

                      Dear Lisa,

                      I am a new member of HCMA (just joined tonight) and I live in Orlando.
                      Apparently the AHA is meeting here in 2 weeks. Can I be any help? I am 52 yrs old, an oral surgeon,and was diagnosed over 20 years ago. I lost 2 brothers and 2 first cousins to sudden death. I have an ICD. I also have 2 daughters with the gene (ages 3 and 9). I am extremely happy that I found your group. My hat is off to you for doing it. I would like to contribute some energy to helping in anyway possible. Please keep me in mind. My email is [email protected]. Keep in touch.

                      Sincerely,

                      Chris Rafferty

                      Comment


                      • #12
                        Re: August Message from Lisa

                        Welcome Chris. I know Lisa will get back with you soon. We here at the HCMA do our best to disburse information and offer support to anyone affected by HCM. It sounds like you already know a lot about HCM. I'm sure that Lisa can use all the help she can get. I hope to hear more from you soon.

                        Reenie
                        Reenie

                        ****************
                        Husband has HCM.
                        3 kids - ages 23, 21, & 19. All presently clear of HCM.

                        Comment

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