Re: PD Registry created in UK--ALSO IN U.S.!!! - and Epilepsy info.

[george pospisil <ntate@xxxxxxxxxxxxxxxx>]

Hi Linda, Yes, in fact the folks at Baylor Univ. in Houston, Texas are the
ones who worked on the epilepsy site and are also helping set this one up
too, along with folks at the Parkinsons Institute in California and Mayo in
Florida.  This is a joint collaborative effort of the NIH- NINDS and all the
major Parkinson's advocacy organizations.  There are several of us at NINDS
who have gotten together with newly recruited scientists and Dr. John Marler
to form a new neurodegeneration team-- uppermost on the agenda of goals is
to find a cure for Parkinson's. The folks working on epilepsy are also
highly focused and motivated.
Curt


----- Original Message -----
From: "Linda J Herman" <ljherman1@xxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Thursday, March 30, 2000 7:01 AM
Subject: Re: PD Registry created in UK--ALSO IN U.S.!!! - and Epilepsy info.


> Curt,
>    Thanks for the information about the development of a PD registry -
> hope it will be up and running soon. Is this registry being sponsored by
> the NIH or independently by the PD groups?
>    For another example of how the Web can be used to help further medical
> research, take a look at the Epilepsy Gene Discovery Project at:
> 
>
> This  project is sponsored by the Epilepsy Foundation of America, and
> they have an extensive section on confidentiality safeguards.
> BTW for those with interest in seizure disorders, the EFA site also
> announced that today is the start of an NIH Conference on "Curing
> Epilepsy: Focus on the Future." There is an online version allowing
> people to ask questions and join in a chat room  - see:
> 
>         I've noticed other postings about seizure disorders on the list,
over
> the years. Our son has epilepsy - also "idiopathic" like my PD, and there
> is no other family history. I often wonder if there could be a genetic
> connection - could he have inherited a genetic neurological suseptibility
> from me, that under  certain environmental conditions can bring on
> seizure disorders, and under others bring on Parkinson's symptoms
> instead?  Just a theory, but I can only hope that by the next generation,
> we will know how to prevent and cure both of these disorders.
> Linda