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Trying to make a difference


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  • Trying to make a difference

    So here's the latest and greatest!! heh

    About a week ago we had 'youth sunday' at church when the youth group completely ran church. 4 kids spoke, including me. we were all talking about our dreams and how we are young but we will make a difference, and pushing the congregation to push to work at thier dreams that they set aside when they had children, etc.

    SO ANYWHO what i shared was my dream to save lives by spreading awareness of not only HCM, but other cardiovascular diseases that kill people every year. Long story short a family friend came up afterwards and said she works with medical students and could issue grants to me to do some sort of screening or anything that could help.

    so our first shindig has been talking (or trying to...hasn;t written back yet...) to the PG county athletics director to find some way we could put screening questions just on or with public school sports physicals, and if we can, attach information on sudden death and undetected heart conditions.

    so what do you guys think? he hasnt written back yet and its been almost a week. ~*speaking of weeks*~ monday will be 4 weeks after my implant!!! this was the first week (wk 3) i could lift my arm and so everythings been dandy!

    anywho all for now.....toodles!!
    \"The heart swells at the magnificance\"

    1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

  • #2
    Re: Trying to make a difference

    Janelle--Good work. I hope he replies soon and in the positive. Glad your implant is settling in. It will just get better until you won't notice it very often at all.



    • #3
      Re: Trying to make a difference

      Hi Janelle,
      Great to hear your story behind the questions you had asked early last month. Great idea on your churches part to nudge the parents about the dreams the adults had as kids. I hope more people realize we are all here for a purpose and the purpose usually presents itself as a dream at one time or another. So keep dreaming everyone!

      Did you get my email response & attachments that I sent to your "yahoo" email account? I answered a lot of your questions so I'm aniticpating you will have more questions from my answers. We have an organization in Arizona (AIA-Arizona Interscholastics Assoc.) that heads up all sports activities in our state. Since my son, Anthony, died from undiagnosed HCM, this organization has improved their sports phsyical questions. Plus, this fall they will be helping my foundation by distributing our 15-minute video, "What is HCM?", to ALL Arizona High School Athletic Directors and school nurses. That is over 500 educators that will be hearing our story! Do you have the same organization in your state? They would be very beneficial to talk to and plead your cause!

      Let us know how we can be of more help to you in the future!
      Best Regards,


      • #4
        Re: Trying to make a difference

        Keep up the good work. It sounds like you have some good ideas to work on and some nice people to help you!

        Let us know what we can do to help!

        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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