Was wondering whether anyone has contact details for genetic testing for moyamoya?
We live in Australia and are being told that there aren't any accurate tests that can be done. I thought I had seen posts that indicated that testing was being done in the States.
My daughter has unilateral moyamoya and has a 3 month old son who we would like tested.
Would appreciate help from anyone who has had testing done or has contact details.
Thanks

I just got our kit in the mail this week.  It is being done at the Univ. of Texas.  Here is an email address.   Alana.C.Cecchi@uth.tmc.edu

Hi my wife has been diagnosef with mm recently. we r off tomoz to get the 2nd spect test then to prof stoodly on the 15th.
Would love to any info u find out as we have two boys and we r both worried. i will ask prof stoodly about it to and let u know.
Cheers Geoff

Hi Geoff,  So sorry you and your wife have to go through this.  My daughter just sent in her DNA (saliva) to the Univ. of Texas.  I apologize for not having the doctors name handy but I know it is in a post from DJ.  The doctor is speaking at the Moyamoya gathering in Kansas city this summer so her name will be listed there.  You could email Alana and she could let you know if they are taking samples from outside the US.  I have heard the name Dr. Stoodly so I think someone else on this site has seen him.  Best of luck to you both and keep us posted.

hello, i wondered if anyone has more info about the genetic testing - is it to establish if there is a genetic component to an individuals MM or is it for undiagnosed siblings/parents/children to establish whether or not they are predisposed? My youngest daughter who doesn't have MM has had a clear MRI scan but I worry if this is still something that could develop at a later date. Does anyone know if people with MM would always have had visible changes on an MRI since young children or is it something that can develop at any time?