[To all the kids.....]

Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

Date: 06-08-02 17:39

Hi,

This message is for all the kids who participated in the annual meeting:

Thank you for coming and thanks for sharing your experiences. Please feel free to participate in the message board as well. I hope you are all enjoying the summer.

To the kids who didn't come: know that there are other kids out there with what you have and the HCMA is here for you, too. And enjoy your summer, too!

later,

Sarah

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

[Re: To all the kids.....]

Author: Lisa Salberg (208.47.172.---)

Date: 06-10-02 15:33

To all those 10-20 years old with HCM -

I just want you all to know your NOT alone out there! Sarah and I were both diagnosed very young - I was 12. For the younger group - ask your parents if it is ok to use the message board - for you older kids, remember, there are younger kids hear too so please watch your language - thanks -

I remember very clearly what it was to be "the only one" of my friends with medical problems. It is not always easy, but it is not always hard either. Talking to others with the same diagnosis really helps!

So I do hope to see more postings - and mom and dads remember Sarah and I are watching the board very carefully and we want to remain positive,, even when someone is having a bad day, we are focused on HOW to have a better day, but do allow the occasional "this stinks!" moments.

Knowledge is power, stay informed.

Best wishes to all!

Lisa Salberg

President

HCMA

973-983-7429

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

[Re: To all the kids.....]

Author: Paul Murphy (---.dsl.mindspring.com)

Date: 06-14-02 08:19

I'd like to thank you both, plus Kim, Ellen, and whoever else I'm missing for the attention shown our HCM kids at the recent conference. We had originally given Caitlyn, our 12 year old, the option of going to the meeting in NJ if she wanted to (my wife or I were definitely going). Then, after she had a bad stress test about a month ago, we said, "Pack your bags kid, you're goin' with us!" It was great for her (and us) to see all the 'normal' people there that have HCM. Caitlyn was really angry after the kids' breakout session, because she actually had to TALK about herself and admit she hadn't told any of her friends at home yet about her heart condition. So, this is a BIG step in a long process of acceptance and openness for her, and I wanted to thank you both in particular for helping facilitate it.

We told you this at the meeting, Lisa, but I'll say it again: I don't know where we'd be this last 8 months if it wasn't for the HCMA and their materials/website/and most of all, people.

Paul

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

[Re: To all the kids.....]

Author: Lisa Salberg (208.47.172.---)

Date: 06-14-02 11:18

Caitlyn is an amazing young lady who has a great deal to work though, but she will get there. I was so happy she came to the meeting and she and Becca (my daughter) seemed to have a great time... tell her Becca is still talking about her (she thinks Caitlyn is "Cool" )

Becca looked up to her and did not realize until the end of the day that she to had HCM - Becca said "mom, she is just a normal kid"... I thought I would be able to "tell if she had HCM, but I couldnt" I thought that was a interesting observation for a 6 year old.

I am working on next years program already and WILL include much more for our younger participants next year.

Thank you for your kind words and I am very happy you made it to the meeting.

Best wishes,

Lisa Salberg