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
