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.

80s Party in NYC to support HCMA

Collapse

About the Author

Collapse

eas13 Find out more about eas13
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 80s Party in NYC to support HCMA

    Hi everyone,

    Recently my brother was diagnosed with HCM. He is 22 years old and just graduated from college (going to grad school at MIT next year). When we first discovered that my brother had HCM this website was really useful/helpful.

    I live in NYC and am planning an 80s themed boat cruise around the city on August 11, 2005. I plan on donating any profit from the cruise to the HCMA, which was so helpful for my family. (Originally all the profit was going to go towards the NYJL, a volunteer group where I am a member).

    I also hope to educate people about HCM. Until a month ago, I'd never heard of HCM and had no clue that someone in my family could be affected. While the news was at first upsetting, thinking about it now, my family is so thankful that we found that he has it. We orignially planned to play tennis and other sports with my brother this summer--basically do things that could have hurt him really badly. My goal now is to help spread awareness of HCM to prevent families like mine (who have no idea they could carry the gene) from finding out about HCM the hard way.

    Anyway, I just wanted to invite any of you who happen to be in the NYC area, and/or any friends to the boat cruise. The website is

    www.ogghelp.com/80sparty

    It should be a lot of fun and I'm hoping we have a large turnout so I can raise some money for the HCMA.

    I hope to see some of you there!

    Erin

  • #2
    Erin, that's a great idea! I wish I were in the area to attend. I hope you have a great turnout!

    Reenie

    PS: Welcome!
    Reenie

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

    Comment


    • #3
      Dear Erin,

      What a great thing you are doing! I wish I was going to be there. Best of luck with it.

      Cynthia
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        What a great idea
        Unfortunately I no longer live in the eastern part of the US and I don't know anyone from NY.

        I hope your venture is a success.
        Esther

        Comment


        • #5
          What a great sister you are!!!!

          Thank you for all your support, too. Your family and friends are fortunate to have such a compassionate person in their circle.

          Go forth and prosper the world with information about HCM. Let us know how we can support you in your quest. I know that Lisa has tons of materials and posters and fliers that will help you get the word out. Call the office (if you haven't already) and Kelly will set you up!

          I hope we get a report of all your travels, too.
          Good luck!

          Sharon Bates

          www.AnthonyBates.org

          Comment


          • #6
            Erin, Thank you for your support and I wish you great success! Your brother is fortunate to have such a great family. Linda

            Comment


            • #7
              Erin thats awsome.I loved the 80s ps. wish I could go back.Im going to see if my wife wants to go.
              One day at a time.

              Comment


              • #8
                Erin

                that is just great what you are doing, I live in Va and can't be there have fun and hope you do well

                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

                Today's Birthdays

                Collapse

                Working...
                X