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Hi Linda and Marjorie and all,
The state of Nebraska was the first to initiate a Parkinson's Registry...
http://www.hhs.state.ne.us/new/parkdis.htm now appears as a dead link.
The tel. # associated with that URL was 402-471-6585
Maybe a Nebraskan can check that out and report....
They do have rules... see Chapter 17 at:
http://www.hhs.state.ne.us/reg/t174.htm
http://www.nol.org/legislative/statutes/R/81/06/R8106064.html
See also: Providing better treatment for patients with Parkinson's disease: The
creation of a Parkinson's Disease Register
http://www.parkinsonsdisease.com/lwp/LWP13.HTM
The Mulligan Foundation - Enter your information in the Parkinson's Registry
http://www2.parkinsons.org/mulligan/registry/
cheers .......... murray
On 27 Jul 2000, at 8:40, Linda J Herman wrote:
> Marjorie L. Moorefield wrote:
> >Since there isn't a registry of how many people contact PD each day or
> >year, >in what States, their race , age , occupation, etc.,
> >then the only thing we can study is death.
>
> Marjorie,
> Your posting reminded me about list messages this past spring about a Web
> based PD registry under development. It was to be a joint project of
> NINDS, Parkinson's organizations and academic researchers. The URL given
> at that time was : Parkinsonsregistry.org. I had bookmarked it and just
> tried it again, but it is still be unavailable. I wonder the registry is
> still in the works. It could help provide valuable information on the
> causes of PD. DOes anyone know the status of this project? Is it a
> funding problem?
>
> Also wanted to mention that the Department of Defense's Neurotoxin
> Exposure Treatment Research Program is conducting research on the
> mechanisms and treatments of neurodegenerative diseases -- specifically
> on PD, and on the influence of environmental toxins. Funding for this
> research is from the Defense Dept. and is separarte from the NIH funding
> for PD research. They are requesting increased funding ($50 million) for
> FY 2001 to continue and expand the research.
> At the Michael J. Fox Forum in June, a number of DOD funded
> researchers gave excellent presentations. I'm trying to read my
> illegible notes --- they are investigating areas such as gene therapy to
> restore nerve cell functioning, immunophilin therapy to prevent cell
> death, neurotoxicity of insecticides, and long term effects of neurotoxin
> exposure on veterans, especially Gulf War vets - many of whom are
> suffering from neurological problems such as tremor, muscle weakness,
> etc. They reported that one of their studies showed that exposure to one
> type of pesticide did affect dopamine uptake in the brain, and are now
> investigating the effects of exposure to multiple pesticides. Aslo
> stated that an annual summary of the project is forthcoming.
> What we can do? -- Contact your Representatives and Senators to
> coontinue and increase funding for the Department of Defense's NETRP
> research. There should be more info. on the PAN or MJF Foundation web
> sites.
>
> Linda Herman
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February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 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Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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