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Re: [Chordoma_Support_Group] NIH "Genetic Aspects of Choroma" Study.

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  • Martina21@aol.com
    Hello! Would you kindly repost the information to contact them... thanks so much! (I think there was some reason we didn t qualify, but I d be happy to
    Message 1 of 8 , 28 Feb, 2011
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      Hello!  Would you kindly repost the information to contact them... thanks so much!  (I think there was some reason we didn't qualify, but I'd be happy to double-check!)  Martina 




      -----Original Message-----
      From: MPatt57@...
      To: Chordoma_Support_Group@...
      Sent: Mon, Feb 28, 2011 6:29 pm
      Subject: Re: [Chordoma_Support_Group] NIH "Genetic Aspects of Choroma" Study.



      Hi Everyone
       
      I got a phone call today about the Study.  They will be sending me the letters, etc. in a couple of weeks.  When I talked to the nurse, Valerie, she said they need 100 people and haven't gotten that many yet.  So send in the stuff.  these study things are important.
       
      Thanks, Mary
       
      PS Years ago I was in a study group for women's health and they found that some hormones caused breast cancer.  If it wasn't for the study this would have not come to light. 




      -----Original Message-----
      From: uswoods5 <uswoods5@...>
      To: Chordoma_Support_Group <Chordoma_Support_Group@...>
      Sent: Mon, Feb 28, 2011 3:05 pm
      Subject: [Chordoma_Support_Group] NIH "Genetic Aspects of Choroma" Study.

       
      Got my letter today, it took several weeks. They are going to phone in a week or two to do the formal work up, then send the kit.

      When I signed up, I asked Stephanie Steinbart how it was going. She said they had sent out some kits that hadn't come back. If you have a kit in the drawer, get spitting and send it back.:-)

      If you would like a virtual tshirt image, send me a photo.

      http://ca.groups.yahoo.com/group/Chordoma_Support_Group/photos/album/1699145054/pic/list

      Thanks
      Ann



    • uswoods5
      Here it is. You qualify if you have a diagnosis of chordoma, do not have anyone in the family who has had chordoma, and live in the USA or Canada.
      Message 2 of 8 , 1 Mar, 2011
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        Here it is. You qualify if you have a diagnosis of chordoma, do not have anyone in the family who has had chordoma, and live in the USA or Canada.

        ***************************

        Sign up for the Genetic study, the best research, IMHO, that we have ever been invited to participate in!  

        Make sure you phone in for your kit for the sporadic study here:

        http://dceg.cancer.gov/geb/research/activeclinical/chordoma  [scroll down] or call toll-free 1-800-518-8474 and ask to speak with Ms. Stephanie Steinbart about the Non-Familial Chordoma Study. She is a research nurse who can answer your questions and provide additional information about this study.

        I'm waiting for my pot now. We seem to have kept them pretty busy. And don't forget to use the sample pot and mail it back.

        Please don't forget my survey, at http://www.surveymonkey.com/s/HZMLHRW  I'll be meeting the doctor at the end of the month, and I'm going to need a couple of days to download the survey results. Please help to get him really interested in doing a professional study.

        Thank you!
        Ann

      • Melanie
        it took me serveral weeks to get everything too,,glad i could do something, there is a contact info on paperwork if there was any questions or concerns,i hope
        Message 3 of 8 , 1 Mar, 2011
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          it took me serveral weeks to get everything too,,glad i could do something, there is a contact info on paperwork if there was any questions or concerns,i hope everyone got a chance to do it!
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