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Call To Action For All


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Lisa Salberg Find out more about Lisa Salberg
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  • Call To Action For All

    We need your help to prevent drastic cuts to the Rural and Community AED Program! Click on this link to take action -
    Your member of Congress can help prevent drastic cuts to a program that provides your state, with automated external defibrillators (AED?s) ? lifesaving devices that can shock a heart back to its normal rhythm. The Rural and Community AED program provides local AED training and access to this lifesaving technology. Placing AEDs in more public settings could save thousands of lives each year. Without these resources, many communities will have limited or no access to AEDs and many lives will be lost unnecessarily.

    Send your lawmaker an email today by clicking hereand let them know that they can save a life today by ensuring no cuts are made to funding for the AED program.

    We will continue to update you on this situation. Thanks for your support.
    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

    I just posted and hope it will help

    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


    • #3
      Hi Lisa,

      As well, I put my vote on the AHA web-site. Plus, I sent a message to Linette Derminer to share this information with the "Parent Heart Watch" members.

      Working together will save lives and make a difference!



      • #4
        I tried doing this from here in China using my stateside address, but it did not seem to work as I just got another page asking me to register. I hope this works better for others.



        • #5
          I registered and sent an email.

          If either of my children test positive for HCM, I will buy an AED and donate it to the Elementary School they attend.

          I talked to the school nurse, assistant principal and the principal of my kid's school about my condition and the possible need for an AED for my children (or maybe other children).
          They all said that I would have to purchase one and donate it.

          They seemed very unconcerned and said their budget does not allow for any school in their district to buy one.

          Thank you Lisa for the link.
          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.


          • #6
            Hello Eileen,
            I've heard that "song and dance" over and over from the Arizona schools. The money is there, it only has to be "flushed out" from the appropriate corners. Plus, the numbers of deaths in our own Arizona schools has increased in the past few years. Maybe that is because we are capturing the data from the Internet and parents like us that have the knowledge of these incidents are bringing attention to these numbers.

            Besides, over 100 schools in Arizona now have AEDs, some elementary, too. That means they having AEDs in the schools has become a "standard of care" for Arizona schools. If an Arizona school district doesn't jump on the "bandwagon" and adopt a plan to institute AEDs in their schools, they are just playing with numbers. The risk factor and the liability of ignoring this subject is much too high a price to gamble with precious tax dollars. It's only a matter of time before a death occurs in their school and they have to pay big fat legal fees and wrongful death suits.

            Let me know how I can help persuade the powers that be at your school district!

            Warmest Regards,
            Sharon Bates


            • #7
              I just registered and the e-mail has been sent!
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson


              • #8
                I just registered and had the link sent to two of our state officials that I know personally. I'll talk to them and see if they can or should I say WILL talk to their counterparts in the Federal govt.


                • #9
                  I also wanted to say that our school district (11 schools) have already purchased AED's for each school (2 in the more populated schools). Through a state health services grant, we were able to get the funding for health related equipment. I know that many other districts in the state of Massachusetts have these in place also.
                  \"It is not length of life, but depth of life.\"

                  Ralph Waldo Emerson


                  • #10
                    I registered and sent emails to 3 Maryland officials. I know my daughter's school doesn't have an AED.
                    Daughter 12, Chinese adoptee, diagnosed April, 2005- ICD 2008