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Keith,Moyamoya and Miami Ink on TLC ( also update on recent family member just diagnosed)

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  • ilovemybulldog@aol.com
    Hi everyone! Just a quick update. Keith will be on Miami Ink telling his story about moyamoya. He was casted and now waiting for filming for the show. He is
    Message 1 of 3 , Apr 29, 2007
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      Hi everyone! Just a quick update. Keith will be on Miami Ink telling his story about moyamoya. He was casted and now waiting for filming for the show. He is going to get a MRI skull w/a puff of smoke inside and moyamoya and his surgery dates of March 13,2006 and March 23,2006. I will keep everyone informed when the show will be aired.

      My 17 y/0 nephew was also diagnosed with moyamoya this week. So now included in our family with confirmed diagnoses is my brother, my oldest son and my sister's son. Everyone is being tested. My mother had passed at the age of 52 of a perivascular disease, however, no autospy was done but suspecting that this might be what was going on and what caused her death.

      Anyone know of any genetic's dept that are doing testing on families? We would love to participate.

      Sara
      ________________________________________________________________________
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    • Rena
      Check out Moyamoya.com. DJ has posted a link to a study on genetics and Moyamoya being done. Here is a copy of the email he sent out with the link: Hello
      Message 2 of 3 , Apr 29, 2007
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        Check out Moyamoya.com. DJ has posted a link to a study on genetics and Moyamoya being done. Here is a copy of the email he sent out with the link:

        Hello Moyamoya.com Message Board Members,

        Please pardon the intrusion, but I would like to pass on some very exciting news
        about a genetic research study on moyamoya disease.

        I've recently been contacted by a group of genetic researchers at the University
        of Texas Medical School in Houston. Dr. Dianna M. Milewicz and her team have
        come across some wonderful information that could be very helpful in
        understanding more about moyamoya disease.

        I would like to quote some of the information from the research study...

        "We have recently identified a gene that causes Moyamoya Disease. Through our
        research, we have determined that this gene is not the only gene responsible for
        Moyamoya Disease. We are interested in identifying further genes that cause this
        condition. We are asking individuals with Moyamoya Disease to participate in our
        research study to identify genes that cause this condition."

        Please visit the moyamoya.com message board to read more about the research and
        how you can get involved. My post on the subject and further information can be
        found at:
        http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1176941661

        Also, don't forget the registration deadline for our 3rd annual moyamoya.com
        gathering in San Antonio is fast approaching! Visit
        http://www.moyamoya.com/gatherings/2007/ for more information and join us in
        Texas for a wonderful time of meeting and sharing with other people who have
        walked in the same shoes!

        If you have any questions about the research study; the moyamoya gathering; or
        have any problems accessing the message board links, please don't hesitate to
        let me know. Hope to see all of you online soon!

        Regards,
        DJ

        I hope this helps you and anyone else interested in getting involved in the study.

        Rena (my son has MM)

        ilovemybulldog@... wrote:
        Hi everyone! Just a quick update. Keith will be on Miami Ink telling his story about moyamoya. He was casted and now waiting for filming for the show. He is going to get a MRI skull w/a puff of smoke inside and moyamoya and his surgery dates of March 13,2006 and March 23,2006. I will keep everyone informed when the show will be aired.

        My 17 y/0 nephew was also diagnosed with moyamoya this week. So now included in our family with confirmed diagnoses is my brother, my oldest son and my sister's son. Everyone is being tested. My mother had passed at the age of 52 of a perivascular disease, however, no autospy was done but suspecting that this might be what was going on and what caused her death.

        Anyone know of any genetic's dept that are doing testing on families? We would love to participate.

        Sara
        __________________________________________________________
        AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

        [Non-text portions of this message have been removed]






        ---------------------------------
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        Check outnew cars at Yahoo! Autos.

        [Non-text portions of this message have been removed]
      • ilovemybulldog@aol.com
        Thanks Rena. I forwarded this to my sister. She is getting prepared for a trip to Standford and awaiting insurance approval and referrals and Dr Steinberg to
        Message 3 of 3 , May 1 9:14 PM
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          Thanks Rena. I forwarded this to my sister. She is getting prepared for a trip to Standford and awaiting insurance approval and referrals and Dr Steinberg to look at his films. My Primary Care Dr has also sent in a referral for me to see Dr Morcos here in Miami for a celebral angiogram. I moved quite a bit during my MRI and MRA and after my nephew being just diagnosed with the same variant that my oldest son Keith has ( he has it in the back of the brain as well as had the two bypass surgeries) he doesn't want to take any chances.

          Sara

          -----Original Message-----
          From: oneofakindco@...
          To: parentingchildrenwithmoyamoya@yahoogroups.com
          Sent: Sun, 29 Apr 2007 2:08 PM
          Subject: Re: [Parenting Children with Moyamoya] Keith,Moyamoya and Miami Ink on TLC ( also update on recent family member just diagnosed)


          Check out Moyamoya.com. DJ has posted a link to a study on genetics and Moyamoya being done. Here is a copy of the email he sent out with the link:

          Hello Moyamoya.com Message Board Members,

          Please pardon the intrusion, but I would like to pass on some very exciting news
          about a genetic research study on moyamoya disease.

          I've recently been contacted by a group of genetic researchers at the University
          of Texas Medical School in Houston. Dr. Dianna M. Milewicz and her team have
          come across some wonderful information that could be very helpful in
          understanding more about moyamoya disease.

          I would like to quote some of the information from the research study...

          "We have recently identified a gene that causes Moyamoya Disease. Through our
          research, we have determined that this gene is not the only gene responsible for
          Moyamoya Disease. We are interested in identifying further genes that cause this
          condition. We are asking individuals with Moyamoya Disease to participate in our
          research study to identify genes that cause this condition."

          Please visit the moyamoya.com message board to read more about the research and
          how you can get involved. My post on the subject and further information can be
          found at:
          http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1176941661

          Also, don't forget the registration deadline for our 3rd annual moyamoya.com
          gathering in San Antonio is fast approaching! Visit
          http://www.moyamoya.com/gatherings/2007/ for more information and join us in
          Texas for a wonderful time of meeting and sharing with other people who have
          walked in the same shoes!

          If you have any questions about the research study; the moyamoya gathering; or
          have any problems accessing the message board links, please don't hesitate to
          let me know. Hope to see all of you online soon!

          Regards,
          DJ

          I hope this helps you and anyone else interested in getting involved in the study.

          Rena (my son has MM)

          ilovemybulldog@... wrote:
          Hi everyone! Just a quick update. Keith will be on Miami Ink telling his story about moyamoya. He was casted and now waiting for filming for the show. He is going to get a MRI skull w/a puff of smoke inside and moyamoya and his surgery dates of March 13,2006 and March 23,2006. I will keep everyone informed when the show will be aired.

          My 17 y/0 nephew was also diagnosed with moyamoya this week. So now included in our family with confirmed diagnoses is my brother, my oldest son and my sister's son. Everyone is being tested. My mother had passed at the age of 52 of a perivascular disease, however, no autospy was done but suspecting that this might be what was going on and what caused her death.

          Anyone know of any genetic's dept that are doing testing on families? We would love to participate.

          Sara
          __________________________________________________________
          AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

          [Non-text portions of this message have been removed]

          ---------------------------------
          Ahhh...imagining that irresistible "new car" smell?
          Check outnew cars at Yahoo! Autos.

          [Non-text portions of this message have been removed]



          ________________________________________________________________________
          AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.


          [Non-text portions of this message have been removed]
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