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update and research opportunity!


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  • update and research opportunity!

    [update and research opportunity!]

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

    Date: 12-03-02 12:41

    Hello all!

    The good news is I now only have 80 emails left in the old email bin! I thank you all for your understanding... I do hope to be all up to date by weeks end!


    I have a wonderful opportunity for a group of you to help with research.

    1. I need people who are having rather significant symptoms...example - if your obstructed and are looking toward having any type of septal reduction or if your non obstructed and are having a hard time walking up stairs or getting very fatigued mid day.

    2. This is a simple blood test you can take in your own community. You will need to go to a lab for a blood draw.

    3.The results of the blood test along with a copy of your most recent echo report and a list of your symptoms will be sent to the researcher - along with your name, address, phone number and best time to reach you.

    What is this for and what can it mean for the future -

    In short there is a protein your heart creates if it is in "heart failure", the level of this protein are higher in those with heart failure as compared to those not in failure.

    The research team already has a large number of people who are non symptomatic (new york heart class 1) and a large number of people with some symptoms (new york heart class 2), what is needed to make this a very useful study is more of those in class 3, meaning those with more symptoms.

    If the results show that the proteins are significantly higher in those with HCM, this maybe able to be used as a screening tool to find HCM...further if the number go up in connection to symptoms we maybe able to treat the symptoms more effectively by being ahead of the progression of symptoms.

    This is one of those areas that has very limited risk (you have to have a blood draw) and many advantages. This may unlock a large area of ways to better manage HCM.

    If you want to help please do the following:

    1. Email the HCMA and include the following

    Your name - address - phone number

    Your age - age of diagnosis - and list of current symptoms.

    and state that you grant permission to forward the information to the researcher.

    2. When the research office contacts simply follow the instructions given.

    3. Smile and know you have done something good for all of us

    We will forward your email directly to the center and they will follow up all emails personally. The research office will provide you with all information, consent forms and related materials.

    We thank you for your participation and hope to report the findings soon!

    Just a quick note…. this is the best part of the HCMA – researchers and patients really working together for answers!




    [Re: update and research opportunity!]

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

    Date: 12-03-02 14:32

    OK every one... I am doen to 49 emails left..and I ma cooked for th night! This set a record... I have replied to 185 emails in one day...

    I am signing off for the night and my fingers are telling me I own them a manicure!

    Good night...and to the 49 I have left...I promise to get to you all be the end of the week..

    Yes Sharon you account for 7 and Stew about 5 I know I know....



    [Re: update and research opportunity!]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 12-04-02 07:30

    Thank you Lisa!


    [Re: update and research opportunity!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 12-04-02 07:59

    your welcome... I will try to get to yours tonight...



    [Re: update and research opportunity!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 12-04-02 08:03

    wow... I guess I was really tired last night.. I think my posting set a typo record! opps!!

    but I guess you all got the picture
    NOTE: This is a post from the previous forum message board.