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[All new visitors please read this.]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 06-26-02 08:35
To all those who visit this message board and share their thoughts, feeling, experiences, fears, accomplishments, hints and lives... I thank you
You each provide a piece of the puzzle; these pieces may have been hidden from others. The magic of the Internet allows us to communicate in a way never before available in society, and we have come to take it for granted already. Each who shares gives a gift to so many.
I do ask something of each of you, words are very powerful; use caution in your postings remembering that we are all just a little bit different.
A medical adviser does not review this message board formally. Therefore sometimes information can be slightly incorrect and requires confirmation through the HCMA directly or with your physician. By no means does this statement suggest this board is inaccurate, it is simply commonsense to be cautious.
I have amazing pride for all those who share their feelings with others and those who hope to teach others from their own experiences, most of them have not been pleasant experiences mind you.
This web site and message board is only the beginning of what the HCMA must do to improve the quality of lives for those with HCM into raise public awareness. So keep talking, keep sharing, and keep learning.
In closing, thank you all for helping make my dream come true.
Sincerely,
Lisa Salberg
President and Founder
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Marta DeSpirito (---.rasserver.net)
Date: 06-26-02 20:54
Your welcome, but the big THANKS should go to you and all the people involved in creating this web and for everyone's hard work.
Thank YOU.
Marta
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Schrece Davillier (---.proxy.aol.com)
Date: 06-27-02 15:15
I just found this board a fews days ago. I appreciated this web. Thank you and everyone eles that has work on this web. It is a great tool.
Lisa, I want you to know I email Oprah a year ago to see if she would do a show on HCMA. I also would like see if 20/20, HBO Real Sports, Larry King, The View and any other shows you can think of. Can you help me get this going.
Best regards,
Schrece
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Lisa Salberg (208.47.172.---)
Date: 06-27-02 17:56
I have long tried to get the attention of the media and am currently working on efforts with a Public relations firm. What it really comes down to is lack of funding to get the info in front of the right people. Sometimes I get calls from the media, however they get bogged down in the details and find the condition hard to understand, I think this is because some of us have really bad things happen and others live with few limitations...we either do not look "sick" or it is far too scary. Anyway anyone who wants to email - mail - call these media people, the HCMA will support your efforts...anything to raise awareness...
dont forget your local papers and local news...
Thanks!
Lisa Salberg
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: susan (---.179-182.vldsgacbds.dial.optilinkcomm.net)
Date: 06-29-02 10:22
lisa,
thank you, i wanted to say something about the media. when i had my ablation procedure, in houston texas, a news team from san antionio was intrested in interviewing and filming the procedure, this was almost 5 years ago. they filmed the whole procedure. my only request was that they didn't show anything that might embarass me. the interview before hand lasted about 30 minuets. i felt that i was helping people with hcm learn more about what was wrong.
susan
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: KAREN E (---.proxy.aol.com)
Date: 06-30-02 23:12
Lisa: This message board is a great tool for education, information, and just keeping track of what's going on with HCM from pt.s perspective. But your cautionary statement should be taken seriously. On the publicity I would expect to see some when Dr. Maron has his Conf. in Sept.
But we as either pt.s or advocates of those family/friends close to us with the dx.must also educate whenever we can. Just the other day we had my son's evaluation with local cardiologist,and I mentioned Dr. Maron's conf. in Minneapolis.
By the end of the visit the MD was asking me to send her info. I had on the conference. Take Care Karen
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 07-01-02 18:38
Karen and all...
Thanks for the input and thanks for helping make the message board tick!
Lisa
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 06-26-02 08:35
To all those who visit this message board and share their thoughts, feeling, experiences, fears, accomplishments, hints and lives... I thank you
You each provide a piece of the puzzle; these pieces may have been hidden from others. The magic of the Internet allows us to communicate in a way never before available in society, and we have come to take it for granted already. Each who shares gives a gift to so many.
I do ask something of each of you, words are very powerful; use caution in your postings remembering that we are all just a little bit different.
A medical adviser does not review this message board formally. Therefore sometimes information can be slightly incorrect and requires confirmation through the HCMA directly or with your physician. By no means does this statement suggest this board is inaccurate, it is simply commonsense to be cautious.
I have amazing pride for all those who share their feelings with others and those who hope to teach others from their own experiences, most of them have not been pleasant experiences mind you.
This web site and message board is only the beginning of what the HCMA must do to improve the quality of lives for those with HCM into raise public awareness. So keep talking, keep sharing, and keep learning.
In closing, thank you all for helping make my dream come true.
Sincerely,
Lisa Salberg
President and Founder
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Marta DeSpirito (---.rasserver.net)
Date: 06-26-02 20:54
Your welcome, but the big THANKS should go to you and all the people involved in creating this web and for everyone's hard work.
Thank YOU.
Marta
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Schrece Davillier (---.proxy.aol.com)
Date: 06-27-02 15:15
I just found this board a fews days ago. I appreciated this web. Thank you and everyone eles that has work on this web. It is a great tool.
Lisa, I want you to know I email Oprah a year ago to see if she would do a show on HCMA. I also would like see if 20/20, HBO Real Sports, Larry King, The View and any other shows you can think of. Can you help me get this going.
Best regards,
Schrece
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Lisa Salberg (208.47.172.---)
Date: 06-27-02 17:56
I have long tried to get the attention of the media and am currently working on efforts with a Public relations firm. What it really comes down to is lack of funding to get the info in front of the right people. Sometimes I get calls from the media, however they get bogged down in the details and find the condition hard to understand, I think this is because some of us have really bad things happen and others live with few limitations...we either do not look "sick" or it is far too scary. Anyway anyone who wants to email - mail - call these media people, the HCMA will support your efforts...anything to raise awareness...
dont forget your local papers and local news...
Thanks!
Lisa Salberg
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: susan (---.179-182.vldsgacbds.dial.optilinkcomm.net)
Date: 06-29-02 10:22
lisa,
thank you, i wanted to say something about the media. when i had my ablation procedure, in houston texas, a news team from san antionio was intrested in interviewing and filming the procedure, this was almost 5 years ago. they filmed the whole procedure. my only request was that they didn't show anything that might embarass me. the interview before hand lasted about 30 minuets. i felt that i was helping people with hcm learn more about what was wrong.
susan
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: KAREN E (---.proxy.aol.com)
Date: 06-30-02 23:12
Lisa: This message board is a great tool for education, information, and just keeping track of what's going on with HCM from pt.s perspective. But your cautionary statement should be taken seriously. On the publicity I would expect to see some when Dr. Maron has his Conf. in Sept.
But we as either pt.s or advocates of those family/friends close to us with the dx.must also educate whenever we can. Just the other day we had my son's evaluation with local cardiologist,and I mentioned Dr. Maron's conf. in Minneapolis.
By the end of the visit the MD was asking me to send her info. I had on the conference. Take Care Karen
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: All new visitors please read this.]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 07-01-02 18:38
Karen and all...
Thanks for the input and thanks for helping make the message board tick!
Lisa