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Off to Washington DC!

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Lisa Salberg Find out more about Lisa Salberg
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  • #1

    Off to Washington DC!

    On Wed. Kelly and I will be attending a lunch at the Senate building - the topic "Sudden Cardiac Arrest". Bill Frist will be the key note speaker and members of congress and the senate will be there.

    We hope to open discussion with out elected officials to find new ways to have our government help spread the word on SD!

    The HCMA office will be closed on Wendsday July 14 so that we can attend this event.

    Best wishes,
    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)
    Tags: None
  • #2
    Re: Off to Washington DC!

    We(or atleast I) have no idea the amount of effort and time you put into making our lives better. What a great thing you all are doing. I wish you the best of luck and safe travelling.

    Take care,
    Pam
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

    Comment

    • #3
      Re: Off to Washington DC!

      Good luck with the luncheon! Try to remember to take in a couple of sites while you are there, and don't forget that camera!

      Reenie
      Reenie

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

      Comment

      • #4
        Re: Off to Washington DC!

        This trip to Washington is the tip of the iceburg my friends! The HCMA is out to change the landscape in terms of the general publics understanding of this disease. We are going to need YOUR help!!

        We have some big dreams here - all of which come down to a very basic goal - to improve the lives of all of those living with HCM. To improve lives we must first ID those with HCM - this is a BIG challange.

        Take care,
        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

        • #5
          Re: Off to Washington DC!

          Lisa

          We all here will keep our fingers crossed for you guys and take a tour of the White House while you are there it is a one of a kind site and one you will remember for the rest of your life, have fun

          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment

          • #6
            Re: Off to Washington DC!

            Lisa-

            Have a great trip and best of luck. I don't know what we'd do without you and Kelly

            Ange

            Comment

            • #7
              Re: Off to Washington DC!

              Thanks for the l kind note!

              We will fill you in ASAP!

              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: Off to Washington DC!

                Have a great & fulfilling trip!

                Thanks for all you all do!

                Give them our stories,let them know US.



                Godspeed
                Laura
                Laura Johnson

                Comment

                • #9
                  Re: Off to Washington DC!

                  Laura,
                  I will surely do just that!

                  Your voices will be heard!!

                  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

                  • #10
                    Re: Off to Washington DC!

                    Have a great trip (I know you are already on your way)! My thoughts & prayers will be with you and Kelly today. Our stories are the key to unlocking the hearts of many in Washington. You have the floor my dear, it's time to use it to our benefit.

                    Let us know how we can help. You can count on me for my full support and involvement.

                    Blessings for a wonderful trip!
                    Sharon

                    Comment

                    • #11
                      Re: Off to Washington DC!

                      Me too Lisa, anything i can do to help all you have to do is ask, and i will do what ever is nessasary to help, just tell them like it is and it could happen to them or one of there loved ones

                      Shirley
                      Diagnosed 2003
                      Myectomy 2-23-2004
                      Husband: Ken
                      Son: John diagnosed 2004
                      Daughter: Janet (free of HCM)

                      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                      Comment

                      • #12
                        Re: Off to Washington DC!

                        Hi Lisa

                        I know you will do your best today. You can count me in for helping in anyway. My email address is listed, send me an email and I will give you my phone #.
                        Maybe you will need people from different states? I am from Minnesota and I'm ready to help all that has been diagnosed and others that will be diagnosed with this horrible disease.
                        You GO GIRL!!

                        All my blessings
                        Esther

                        Comment

                        • #13
                          Re: Off to Washington DC!

                          Back in NJ! What a great day!

                          The HCMA has joined a new alliance of other organizations with the goal of raising awareness of sudden death. This alliance will be focusing on furthering efforts on legistation issues to begin with. YOU will be called to action when items require YOUR attention and the attention of your elected officials!!

                          Kelly and I met with Congresswoman C. McCarthy of NY. (picture to be posted soon on the photo album). I will be sending a complete report soon on this meeting and what YOU can do to help!!

                          It was a great day and a great start at raising awareness at a completely different level - hang on to your seats ...its gonna be a wild ride

                          Best wishes!
                          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

                          • #14
                            Re: Off to Washington DC!

                            Thank you Lisa, for saving so many lives, for opening so many eyes, and treating so many hearts.

                            We love you!!!

                            Sarah

                            Comment

                            • #15
                              Re: Off to Washington DC!

                              Photos are available on in the photo album!

                              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

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