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  • I'd like to hear your stories.

    [I'd like to hear your stories.]

    Author: Shannon Travis (166.68.134.---)

    Date: 11-18-02 14:40

    Hello all,

    My name is Shannon Travis and I’m a journalist from Columbia University’s Graduate School of Journalism in New York City. I’m putting together a documentary on kid and teen athletes whose lives have been slowed or cut short by sudden death syndromes like hypertrophic cardiomyopathy, or HCM. And I’d like to hear your stories.

    I’ve read some of the messages posted to this board and I must say, I’m both moved and amazed. Moved by your heartfelt expressions of loss and your incredible network of support. And amazed that more people don’t know about HCM despite efforts like yours and others to cast a spotlight on it. Perhaps this documentary can change that.

    I’ll first need to speak with real people like you, with real stories. Whether it be the young male or female athlete currently coping with this condition, family members still grieving the unexpected loss of a loved one to HCM, or anyone who’s doing something – big or small – to make a difference.

    I’m asking for your help in putting faces to these little known stories. My phone number and email are below. Please feel free to contact me.

    Thank you,

    Shannon Travis

    718-344-0445 (phone)

    [email protected] (email)

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 11-18-02 15:44

    Shannon,

    Thank you for your interest. I am sure you will get a lot of replies to your request. We are very happy to have others help us get the word out about HCM, how to detect it, and how to help prevent sudden death, especially in young athletes who are undiagnosed due to screenings that aren't intensive enough. I'm sorry if that sounded a little harsh, but it's how many of us affected by HCM feel. Might I encourage you to speak directly to Lisa, the HCMA president. Her # is on the home page of this site and she is very knowledgeable about HCM and it's effects on young athletes. Thank you again.

    Reenie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-18-02 19:14

    Shannon,

    thank you for your interest in HCM, may I ask what drew your attention to it? I would be happy to speak with you and give you my take on being a young person with the condition... I was diagnosed at 12 years old... that was well over 20 years ago...but I recall it well... I founded the HCMA in 1996 after my family lost the 4th member to HCM...and we have several of us living with it.

    I am currently at the American Heart Association Scientific sessions in Chicago but am available on my cell phone at 973-727-2450... I will be available all day Tuesday on the cell, call me.

    Best wishes,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-21-02 08:54

    FYI

    I had a nice talk with Shannon. I may be calling a few of you soon. Maura...call me please.

    Thanks,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 11-21-02 15:29

    Shannon,

    You will be hearing from me soon

    Lisa,

    If I can help call me at 401-846-6685

    Julie P

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 11-23-02 19:30

    Hello Shannon,

    I sent you an email with Anthony's story. Anthony died suddenly at age 20. He was a football player at Kansas State University and had not been diagnosed with HCM until after his death. If you would like to speak with me, I can be reached at 602-482-5606.

    Best Regards,

    Sharon Bates

    Anthony's Mom

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 11-25-02 05:04

    Sharon, I know I have read your story because it related to my little brothers story. He was 20 yrs old and died suddenly after playing flag football at college. He was undiagnosed until after his death as well. If you ever want to chat let me know.

    Julie P.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: I'd like to hear your stories.]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 11-25-02 16:54

    Hi Julie,

    I would love to talk with you. Our stories and pain are very familiar. This can be a difficult time of year, but through the support and love of friends, family and support groups we make it through. If there is anything I can do for you, please call, my number is above.

    Best Regards,

    Sharon
    NOTE: This is a post from the previous forum message board.
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