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Re: [Parenting Children with Moyamoya] Keith,Moyamoya and Miami Ink on TLC ( also update on recent family member just diagnosed)

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  • 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 1 of 3 , May 1, 2007
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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
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