Does anyone know any specialists that are studying "epilepsy" who may want to view an extremely abnormal case?

According the the chief of Neurology at Stanford, he has never seen anything like what happens to me. I suffer from an illness I describe as "nocturnal Jacksonian march grand mal seizures". This illness only effects me when I am asleep, where I go through a Jacksonian march that starts in my left hand ring finger. There are several interesting points to my case, one of which I have been able to stop these march's approximately half the time from overtaking my body. I can trigger them accidentally through various triggers... and more recently I have been 100% successful in stopping the march from over taking me. That however has brought forth a new problem... now they are beginning to come for me during my waking hours... something they didn't do prior to my latest success while sleeping. (I created a brace that ists me in stopping the "march" from proceeding. I know without a shadow of a doubt that much can be learned through me about this illness. My problem... I lost my insurance 2 years after this nightmare began some 7 years ago. Today I know 20 times more about it, and how it is working. Match that with someone knowledgeable in the field who is seeking more answers... I am positive that through me and my "rare" case... information for myself as well as many many others is to be acquired if only I can find the right person to listen and experiment with me. Anyone able to help me? I will appreciate any contributing thoughts... thank you ;)