I am still shocked that I have been diagnosed with this disease. One of my first thoughts was which side of my family did I "inherit" this from?
Stanford sent me a newsletter from their Moyamoya Center a few weeks ago. According to one of the articles: Stanford is leading one of the largest genetic research efforts in investigating the cause of Moyamoya disease. Hundreds of patients at Stanford have donated blood and surgical tissue samples. The samples should allow the Stanford researchers to determine whether a specific gene or protein abnormality is the cause.
Stanford has a kit that they can mail to you (at no charge) that allows for collection of a saliva sample. They also can evaluate family members too.
So to those on my side of the family that has been reading this blog, feel free to contact Monika Varga (mvarga@stanford.edu) or 650-721-2830.
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