[Genetic testing]

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

Date: 10-14-02 17:37

For many years many of you have asked about gentic testing and I have told you that it is not openly available, and it still is not, HOWEVER if you are interested in having genetic testing done to detrimine what genetic mutation you have there is a center looking for 500 people to screen.

What is to be gained by participation in this study? Maybe nothing for you as an individual but what we can learn about HCM and how and why it happens is invaluable for our children and thier children.

When they said 500 I smiled and said...No problem the HCMA members will eat this up!

There are some things you need to know:

1. It can take years to find out the results and in some cases (if the mutation can not be found) you may never know.

2. Knowing ones mutation holds no clinical value at this time - but may in the future.

3. It is free and requires a blood draw.

4. The results are confidential and can not and will not be shared with insurance companies, employers, or anyone else.

If you are interested please email the HCMA with "I WOULD LIKE TO FIND OUT MORE ABOUT GENETIC TESTING" as your RE: on the email. Infromation will be sent to you about how to contact the center and If you write "PLEASE FORWARD THIS TO THE GENETICS LAB" we will forward your information to them as well.

So here is the challange...how fast do you think we can get 500 samples? I think we can do it in less then 6 months...we will see.

I look forward to all your emails.

Lisa

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[Re: Genetic testing]

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

Date: 10-15-02 05:05

Dear Lisa, et al,

My family has sent our samples in and I hope someday to have my sequence framed on my wall. I don't have a fireplace yet, but maybe I will by the time they get my dna mapped!

Sarah

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[Re: Genetic testing]

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

Date: 10-15-02 09:24

Dear Lisa, et al,

My family has sent our samples in and I hope someday to have my sequence framed on my wall. I don't have a fireplace yet, but maybe I will by the time they get my dna mapped!

Sarah

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[Re: Genetic testing]

Author: Julie E (---.fuse.net)

Date: 10-15-02 13:50

Dr. Towbin at Baylor has had mine, my parents and children and at the time when we sent our blood was trying to get tissue from my brother that passed away. That was close to 4 years ago and still have not found our mutation.

The reason I did it was strickly for my children. If they can find mine then we can check the kids to see if they have that mutation as well. Hopefully soon something will show up but I am aware it is a shot in the dark!

Julie

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[Re: I WOULD LIKE TO FIND OUT MORE ABOUT GENETIC TESTINGN]

Author: BRUCE TALLANT (---.proxy.aol.com)

Date: 10-15-02 22:02

PLEASE FORWARD THIS TO THE GENETICS LAB

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[Re: I WOULD LIKE TO FIND OUT MORE ABOUT GENETIC TESTINGN]

Author: BRUCE TALLANT (---.proxy.aol.com)

Date: 10-15-02 22:02

PLEASE FORWARD THIS TO THE GENETICS LAB

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[Re: I WOULD LIKE TO FIND OUT MORE ABOUT GENETIC TESTINGN]

Author: Lisa Salberg (208.47.172.---)

Date: 10-16-02 10:45

REMINDER:

Please send your full name, mailing address, best #'s to contact you day and evening and your approval to forward your name to the lab in an Email to the HCMA at the email above.

Thanks

lisa