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