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Dear Carole and Nita: Dr. Robert Nussbaum from the National Institutes of Health is continuing with genetic research. He may be aware of studies that are going on in your particular area. His phone number at NIH is (301)402-2039. Best Wishes, Bonnie Cunningham NPF From: "Cassidy, Carole" <[log in to unmask]> Subject: Re: Genetic PD 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