If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Heartland HCMers!

Collapse

About the Author

Collapse

Amber Mom of two, wife of one, living with HCM since 1999 Find out more about Amber
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Heartland HCMers!

    My sister and I are co-directors for a Vicky Keller Remembrance Run on September 25 in downtown Cape Girardeau, MO. This race is to raise awareness in this area for HCM as well as to donate our proceeds to the Hypertrophic Cardiomyopathy Association.

    If you live near or in this area, we would love to see you at our event. Our local media and physician community do not see this heart condition as being a big issue. I would love to show them that they are wrong.

    Also, Lisa has been a huge help in helping us to get this event together so if at all possible please come show your support!
    Always and forever, all I do is for you MOM!
    Vicky Keller
    1955-1999

  • #2
    Re: Heartland HCMers!

    Amber, A great, big "Thank You" to you and your sister. I know your Mom is proud! Linda

    Comment


    • #3
      Re: Heartland HCMers!

      Amber

      I know your mom would very proud of you as for the rest of your family involved in this

      Amber what part of the Cape do you live i lived there for a brief time then moved closer to my mom when she was dieing of cancer, i now live in virginia and wish i could be there but i'm having a rough time with my disease right now,


      Hope you make alot for the foundation it would go to help alot of people with the disease

      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


      • #4
        Re: Heartland HCMers!

        Hello Amber,
        It sounds like your event will be wonderful. I am flying into Kansas City tomorrow!

        I will be heading to Manhattan, KS to promote my upcoming heart screening, Sunday, October 10th, at the Kansas State University Alumni Center. Of course, I will be talking with the media & area high schools in promotion of our 8th heart screening event, 4th one at K-State! We have screened over 1,400 young people and find that 6% of the young people screened have heart issues that they didn't know about. We offer heart health education, heart screenings for awareness and heart safety by promoting AED's in our schools. All done in honor of my son, Anthony, who died 4 years ago from undiagnosed HCM.

        What can I do to help you with your upcoming event? If it's okay, I will try and get some media attention in the KC area...not too far from St. Louis. I see from the Yahoo Map that you town is a little distance from St. Louis. It doesn't look like I can come to your event just with driving distance (Manhattan, KS is 2.5 hours west from KC, and St. Louis is 4 hours east of KC). I have some contacts in St. Louis that had expressed interest in doing heart screening events in their community...why not for your community in the future.

        Please check out my web information www.AnthonyBates.org when you have an opportunity. I would be happy to discuss assisting you in a future heart screening event for the young people (ages 14 - 40) in your community.

        I wish I could offer more assistance, but they haven't perfected the cloning process yet. Until then, I can only be in one place at a time.

        My prayers and good wishes will be with you and all the participants on Saturday! Your event will be a smash hit...education is the key to better awareness of HCM.

        Blessings,
        Sharon

        Comment


        • #5
          Re: Heartland HCMers!

          Shirley- I grew up in Cape County in the country on a farm off of Route K/William Street.


          Sharon-Thanks for your response, I would love to get a screening together for this area. As I said earlier, the physicians around here do not seem to care about my condition. I have to drive at least 2 hours to see my heart doctors b/c the doctors around here will not educate themselves about this condition. I DO NOT want others to learn about their HCM in the same tragic way that I learned about mine.
          Always and forever, all I do is for you MOM!
          Vicky Keller
          1955-1999

          Comment


          • #6
            Re: Heartland HCMers!

            Dear Amber,
            You and your sister are to be commended . I know your mom must be very proud as she watches over you. I thank you for all your efforts and wish you success.
            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

            Today's Birthdays

            Collapse

            Working...
            X