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.

Ideas needed

Collapse

About the Author

Collapse

Jillmgk Find out more about Jillmgk
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Ideas needed

    I have posted on here before, when my son was tentatively diagnosed with HCM, which they are now saying is NOT HCM, but is an athlete's heart. Anyway, my big 13 yr old wants to play middle school football this fall, and I was talking to the coach Friday. They do not have an external defibrillator device available for practices- they are only there for games becasue paramedics must be present at all times for games. (My son is cleared for all sports and we will have an echo again prior to practice even starting, just to be sure- this is for all kids, not just mine!) Anyway, we discussed the need to have this for all of the sports there and are looking into ways to get the school to obtain this- through private donation or the school board. Any suggestions on where to start? I figured that someone here has taken on that task at some point! Thanks in advance for any suggestions you may have.
    Jill

    mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

  • #2
    Hi, Jill. There are several people here who have worked ot get AED's in schools and available for all sports activities. Below is a link to a high school senior's successful (VERY SUCCESSFUL) campaign to raise money for these AED's. She also gives names of groups that helped her. For yourself, is there a chance that you can do a fund-raiser to get the funds to buy one? I know that www.amazon.com sells them online, as do many other places. They're about $1500 for one. If you could raise money, you could purchase one and donate it to your son's school. That won't help the high school when he transfers, but it's a start. Best of luck. I'm sure others will post to help you soon.

    http://forum.4hcm.org/viewtopic.php?t=3448&highlight=

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Give me a call on Tuesday I have a few ideas for you.

      Lisa
      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)

      Comment

      Today's Birthdays

      Collapse

      Working...
      X