[wonderful site for HCM patients]

Author: Judd Rupp (---.proxy.aol.com)

Date: 12-15-02 04:02

Thanks, to all of you who participate with the forum of emails!

This is a super site that you should all feel lucky and proud that it exists. It is news to me....and, I have had an ICD for over 2 years now. My doctor told me about it upon prying him for more information. I had a cardiac arrest while working out at age 35. Since this 'brush with death', I have taken on many different projects and tasks, both familial and volunteer wise.

I recommend, if you have not, get involved in your community American Red Cross and American Heart Association. Volunteer for a committee or project. Give back. It is very therapeutic and educational. We are all very blessed and lucky to be alive having HCM like probably all that are reading this- have!

Let me know what involvement any of you have with trying to help others or education of HCM/Cardiac Arrest.

I am asked to speak every now and then to Heart Walk groups, senior groups, and ICD support groups. I have always enjoyed doing this and feel honored to tell my inspiring story. It is very rewarding and gratifying. I hope that you all will get involved in your communities to get these important heart messages out. You may be able to save lives that you never thought about, at the same time make yourselves feel wonderful for giving back!

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[Re: wonderful site for HCM patients]

Author: Tim Stewart (---.dsl.dytnoh.ameritech.net)

Date: 12-15-02 05:41

**** Judd … Welcome to the forum!

You have some good ideas in your post about “giving back” to the community. I just wanted to point out that the only downside to participating in the American Heart Association fund raising activities is that (as was pointed out in a previous thread) the AHA does not financially support the HCMA. They provide very little funding for HCM research and they are not in any way connected to the HCMA. Lisa Salberg (President of the HCMA) suggests that donations to the HCMA can be made by sending them directly to the HCMA.

Other than donating directly, education of the public is (in my opinion) one of the best way to give back. Bringing school, communities, and even cardiologists up to speed on how to identify and treat Hypertrophic Cardiomyopathy is one of most important things we can do right now. There are too many tragic deaths which could have been prevented with proper identification and treatment by the medical community.

Again, welcome aboard!

Tim Stewart

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[Re: wonderful site for HCM patients]

Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

Date: 12-15-02 07:53

Dear Judd,

I'm glad you found us.

Yes, we are strong proponents of giving back. Please read the recent post about screenings. Many HCMA members run and sponsor community heart screenings (echos) to identify possible HCM and other heart problems that go overlooked at regular physicals. Families that have lost loved ones often set up scholoarships and programs in their lost one's name.

In addition, I want to emphasize how unhelpful the AHA is for anyone with HCM or for the HCMA. Most AHA staffers don't know what it is and don't have any information for you. they don't offer screenings nor do they promote HCM awareness. Lisa has been trying to win them over for a long time, but they are unresponsive. I don't think that the Red Cross's mission has any bearing on HCM --unless I am mistaken.

There are many ways to give back on a personal level. Me---I moderate a message board for people with HCM (gee, which one is that???) and I volunteer at the HCMA annual meetings and any Chicago-based conventions. I also provide Lisa with technical and computer advice (having been in tech support for a while, too). I have also contribued to the newsletter and the web site (and hooked Lisa up with an excellent web developer/host who is building us a new site for very little money). I used to moderate the Heart Problems board at ivillage.com but after two years I needed a little break.

take care,

Sarah

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[Re: wonderful site for HCM patients]

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

Date: 12-16-02 14:24

Judd,

Welcome to the HCMA - We are happy to have you here and hope to see you often! I am glad your doctor informed you about our site. Please email the HCMA with your address and we will be happy to send you more information on HCM and the HCMA.

I am very glad to hear that you have an ICD! I encourage you to share your story with the HCMA by writting up your story and emailing in, we will use it in an upcoming newsletter. Our newsletters reach nearly 2000 families and 1000 members of the medical community!

Again~ Welcome!

Sincerely,

Lisa Salberg

President