Floating in the back of my head is a list I've seen somewhere on ongoing clinical trials, may be just drug trials. naturally, when I try to remember where I saw this, I can't (!) but maybe it will pop up tonight around 3 a.m. when I do my best thinking...I'll let you know Carole -----Original Message----- From: Nita Andres [mailto:[log in to unmask]] Sent: Monday, November 16, 1998 11:14 AM To: Multiple recipients of list PARKINSN Subject: Re: Genetic PD Thanks Carole, the study I was referring to was being done at Colombia Presbyterian Medical Center.( the one I was able to get my kids into) My husband and his late brother has/had late onset PD. I won't be around when my kids are old enough to have such late onset and being a nurse married to a physician I am interested in any other studies still open. Some are bound to turn up. I knew about the Contursi family, but was not sure where it was done. It was someone else whose doctor said "not genetic, but runs in families" I can't remember who it was, but on the face of it, that is silly. Many genetic diseases pop up now and then and and as you know others follow other paths. I just want to do every thing I can do. My husband has a cousin who worked (still does) at the NIH, I assumed that he would look, but maybe I should call him. It is a big place. My daughter in Baltimore trys to keep up, but everyone works. We are all ALMOST sure that it came from my mother-in -law's family, but the descendants of my fathers in laws brothers are reaching the right age. I try (unsuccessfully) to not be too obvious about watching every move and or tremor. They tolerate me watching, really nice people. Maybe even that is unusual, to love your in-laws so much-all of them. Back to PD if you know or hear of other studies please let me know. Who knows what will pop up. I found the one we are in on the list, but the coordinator has changed jobs and from what I can understand (not easy ,Texas english and New York english.) they are now looking at other aspects of PD. Anyway , I will write them and avoid accents. Thank you again, Nita Cassidy, Carole wrote: > Nita: > > The only gene that has been identified at this point is the alpha synuclein > mutation cloned by Polymeropoulos et al at NIH in 1996. That gene has been > positively identified in only a very few (3 or 4?) families including the > Contursi kindred of Italian origin. As I recall, the PD in these families > is the young onset variety. Further, it has been postively established that > the mutation is NOT present in most other young onset patients. Hope this > clarifies your physician's comments a little bit > > Carole > -----Original Message----- > From: Nita Andres [mailto:[log in to unmask]] > Sent: Monday, November 16, 1998 6:48 AM > To: Multiple recipients of list PARKINSN > Subject: Genetic PD > > I do not know for sure, because the gene has not been found (or this > one-). My husband and late brother in law both have/had it. My mother in > laws family did not escape Russia (from the Czars) so we don't know. It > would be very unusual for two brothers to get it from some environmental > source since there was 8 years difference in their ages. I have entered > my kids and nieces and nephews into a study. I don't think that phase of > the study is still active. I will write them and see what is happening > a little later. The study group certainly wanted them and there was no > charge. If it is still open I will post it. complete with address and > phone number. If any one knows of other studies, I would like to know. > Nita