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Article Published in Ped. Cardiology Today, November, 2004

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  • Article Published in Ped. Cardiology Today, November, 2004

    "Non-Profit Organization Profile: The Anthony Bates Foundation"
    Pediatric Cardiology Today
    November, 2004
    By: Sharon Bates

    Just four short years ago a life changing experience caused me to reevaluate my life. Up to that point, I had 20 years in business, and a college education in management and marketing. With 16 years as a computer programmer, project manager and computer consultant my life came to a crossroads. I was riding the Y2K wave all the way to New Jersey. Far from my Phoenix, Arizona home tragedy struck and made me take a 180-degree on the importance of living life with all I had to offer.

    It happened one sunny afternoon in July of 2000 when my only child, Anthony Bates, died suddenly from undiagnosed Hypertrophic Cardiomyopathy (HCM) at age 20. Anthony was in Manhattan, Kansas attending Kansas State University on a full athletic scholarship. He was an honor student and a rising athlete in the football program when he had a cardiac episode while driving his truck after a light workout at the K-State weight room.

    I couldn't find the link of HCM anywhere in the family. With no direct connection to this genetic disorder I had no family history that could have raised a red flag during any of Anthony's many preparticipation sports physicals. Then how did this slip by year after year in a strong young man with no apparent symptoms? Post mortem I was told Anthony's heart was 3 times the normal size at 680 grams. Could there have been a way to have helped Anthony? According to the HCMA (Hypertrophic Cardiomyopathy Association), the only way to detect HCM was through echocardiography. Normally, an expensive test not administered freely in the cost-conscience insurance society.

    During my search and within the first year after Anthony's death, I found more families that had similar stories. Sudden death was the only symptom and no known carrier for this condition had been uncovered. HCM has genetic markers known and unknown. According to Dr. Barry Maron, Minneapolis Heart Institute, and a leading researcher in HCM, this condition has been known to spontaneously mutate. That mutation would be the start of the genetic link.

    Many people told me that HCM was very uncommon and sudden death related to HCM was less common. Then the numbers started adding up to more than uncommon, with 1 in 500 people in the general population at risk of developing HCM. Up to 100 young athletes die every year to sudden cardiac death. According to the American Heart Association, 5,000 to 7,000 young people die of sudden cardiac death each year. Of those deaths, 36%, have been linked to HCM. Many more of those deaths are suspect. The media covers the stories about some of the young athletes, what about the other children? Should we have a way of protecting our children with early detection of cardiac anomalies?

    With that in mind I continued my research in the direction of heart screenings. I knew, as a parent, there had to be more options available. On the internet I found several organizations that had formed with the same thing in mind after the loss of a loved one to sudden cardiac death. Using networking skills two of the organizations, A Heart 4 Sports (www.aheart4sports.org) and The Chad Foundation (www.chadfoundation.org), found community people, doctors, sonographers and interested echocardiography manufacturers to lend a helping hand. I spent countless hours learning about the process needed to undertake a heart-screening event. Each of the organizations had wonderful input and lessons to help me take strong steps towards my own heart screening goals.

    I moved back to Phoenix, AZ and started to cultivate the process that would start the foundation in my son's name, The Anthony Bates Foundation. This followed my first two heart screening events October, 2001, at Kansas State University in Manhattan, KS, and also May 2002 at Mountain Pointe High School in Phoenix, AZ.

    Foundation mission

    Education and awareness of HCM is the main purpose of the Anthony Bates Foundation. Each heart-screening event reaches hundreds, maybe thousands of people with their message. Saving young lives through the heart-screening event became the "golden ring and bonus" and the events became the "mission statement" In addition to the heart screening events, the ABF performs education and awareness campaigns which include a 15-minute informational / educational / promotional video, "What is HCM?", ongoing training to individual(s) and group(s) on "How to Run a Community Heart Screening," and presentations to parent groups and school administration on heart screenings, heart health and the need for AED's in schools, to mention only a few.

    With the help of the echocardiogram machine manufacturers, including Philips Medical, Seimens-Acuson, and Toshiba, I have been able to create relationships with each of these manufacturers and their local sales forces, who help support the local ABF screening events.

    Local doctor offices and hospitals have also come to the aid of The Anthony Bates Foundation. Additional machines through these organizations have also been used at events. ABF screening procedures includes blood pressure readings and echocardiograms on every heart-screening participant. Recently, ECG's are offered to people with abnormal echocardiograms. Measurements of the Left Ventricular Out Track, Septal Wall, Posterior Wall Thickness, and Left Ventricular Wall are taken and read by the attending cardiologist. These procedures and protocol have been consistent in the last seven events providing services for over 1,400 participants.

    During an event each participant receives an Exam Completion Form showing his or her screening results. If the participant has indicated on their questionnaire, the association forwards the screening results to that person's family doctor. This allows ABF another opportunity to inform and educate individuals as well as the medical profession.

    Training Packets

    The Anthony Bates Foundation offers training packets for parties interested. Dr. Barry Marcus, Scottsdale, AZ, adds, "The procedures and process are extremely well organized and thought-out." Examples of letters, documents, permission forms, questionnaires, and presentation materials are included in the training materials. Each event will take on a unique flare and have new challenges and circumstances. I hope that more people will have the desire to take on a Community Heart Screening Event.

    For more information and/or to assist in future heart-screening events please contact:
    The Anthony Bates Foundation
    428 E. Thunderbird Rd., # 633, Phoenix, AZ 85022, (602) 482-5606
    www.AnthonyBates.org

    link to view article with pictures:

    http://www.pediatriccardiologytoday.com

    correction:
    "According to the American Heart Association, 5,000 to 7,000 young people die of sudden cardiac death each year."
    Should be: Mid-American Heart Insitutes findings & an estimate from the CDC

  • #2
    Re: Article Published in Ped. Cardiology Today, November, 20

    Sharon, you are doing incredible work.
    You should be very proud of what you have accomplished.
    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
    So if you are capable of thought then you are capable of great things
    Good luck and stay well.
    Glen

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    • #3
      Re: Article Published in Ped. Cardiology Today, November, 20

      yes Sharon

      You should be very proud of what you have and i bet Anthony would be very proud too, keep up the great work

      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

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      • #4
        Re: Article Published in Ped. Cardiology Today, November, 20

        Keep up the great work!

        Thank you!
        \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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        • #5
          Re: Article Published in Ped. Cardiology Today, November, 20

          Sharon ,

          That is a great article . Your hard work has to have reached a large audience in that journal. Keep up the great work that you do and thankyou.

          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Re: Article Published in Ped. Cardiology Today, November, 20

            Hi everyone,
            I have been able to showcase my article at an Arizona Echo Society meeting on Wednesday evening (11/17) with 25+ echo-sonographers and a forum of doctors from a large national hospital chain in the Phoenix area. The meeting topic was about a 3D echocardiography study that was done and the advantages this technology brings to the field of echocardiography. The machines are available for use and sale and will be wide spread in the near future. There are big purchases being made with this new technology. My question to the echco manufacturers, "What are you going to do with all the pre-owned 2D machines that are traded in and still operational? A donation to my foundaiton could be nice." I think I got their attention and could be receiving my own equipment soon.

            Lots of good stuff and newly developed relationships are forming. It is all good! Or at least I keep reminding myself of the greatness that has been made possible through my dedication to make our world a better place in my life time.

            Thank you everyone for your continued encouragement and support. What a great group you all are!! Thank you, Lisa for having this vision.

            Blessings to everyone,
            Sharon

            Comment


            • #7
              Re: Article Published in Ped. Cardiology Today, November, 20

              Sharon,
              To turn a great tragedy, into an opportunity to save lives-is the mark of a GREAT WOMAN! I am proud to associate with you on the boards.
              RONNIE

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