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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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Ivan got up early this morning and produced an agenda' or list of issues
affecting PD. I was also up early and made another list from my
(Newfoundland) point of view.
In this message I repeat Ivan's 10 items and my 10 list points. Who is
next?
IVAN'S 10 AGENDA ITEMS:
1) Re-shaping public and media PERCEPTIONS of the "typical PWP", and
increasing PWP and CG visibility, especially, on television;
2) Developing coordinated fund - raising EVENTS FOR cellular RESEARCH
on the causes and potential cures of PD, especially during World,
national and local activities
each April (PD Awareness Month) ;
3) Empowering PWP's to attract more philanthropic, private, federal, state
or provincial, and local
FUNDS FOR PD-FRIENDLY HOUSING, and for long-term, qualified AT-HOME
CARE, paid appropriately;
4)Establishing CRISIS PREVENTION plans for poor and minority(including
gay) PWP's at
greatest risk;
5)Extending mobile SCREENING clinics to the inner cities and to isolated
rural areas; 6) RE-EMPLOYING PWP's as consultants (I
am one example of a PWP with energies and hopes,
but no income except SSDI)and as policy-makers
7) PRESSURING the abysmally-flawed (American) N.I.H., which has failed to
fund the $100,000,000.00 Udall Law (should Harold Varmus be pressured to
RESIGN?);
8) Planning public INFORMATION CAMPAIGNS, especially through TV and radio,
about
medical, surgical and other treatment options;
9) Creating respite care and support services for overwhelmed and
exhausted PD CAREGIVERS; . 10) Prioritizing MEDIA COVERAGE OF RESEARCH
of genetic, cellular and biochemical research on the various forms of
Parkinson's.
ANNE'S LIST OF DISCUSSION POINTS
*1 Improve communications between National office and regions.
*2 Dispose of the old myths about Parkinson's. Educate the public
about the new model and
increase awareness.
*3 Increase the funds raised for research and for services by more
than 7% each year.
*4 Promote the team approach to Parkinson care (as developed in UK &
Australia) Use the Movement Disorder Clinics as examples of how to do it
right.
*5 Take PD information teams into inner cities and remote and rural
communities. Provide care after diagnosis.
*6 Lobby governments to extend drug coverage to seniors in all
provinces. Allow co-payment and other ways to spread the money, yet meet
the need.
*7 Consider starting some drug coverage for under 65s with
catastrophic costs (see Ontario plan).
*8 Hold a competition to select and build one or more parkihomes for
YOPPs.
*9 Build bridges to independent societies in BC Alberta Saskatchewan
and Ontario.
*10 Expose the holdups affecting Canadian cellular and neurological
research.
END OF LIST
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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 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, 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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