Der Michel,
Your suggestion of verification and discovery is entirely
reasonable. I wish that a small group- perhaps yourself leading it,
might get in touch with Niki Hoose and find out substantively and
specifically why I was suddenly excluded from the WETA / Lehrer
broadcast. Perhaps all is not lost.
I just cannot have the door closed, with all that I have been preparing
to present.
I should make it clear that in none of the local NBC, CBS or
Community Cable TV shows have I ever even mentioned my gayness. If I am
able to be filmed for the Lehrer Hour, or for that matter for any
television broadcast, I would hope to be given the time to emphasize
public policy issues, and caregiver ssues, such as:
1) the need to re-shape public and media perception of
the "typical PWP"
2) ways to empower PWP's to gain more philanthropic,
private, federal, state and local funds for long-term,
qualified at-home care, paid appropriately
3) crisis prevention for poor and minority(including
gay) PWP's at greatest risk
4)ways to extend medical screening services to the inner
cities and to isolated rural areas
5)ways to re-employ PWP's as consultants (I am one
example of a PWP with energies and hopes but no income except SSDI)and as
policy-makers
6) issues in NIH politics that have caused failure in
funding the Udall Act FULLY;
7) increasing public education about and access to
medical and surgical as well as non-traditional treatment options;
8) increasing respite care and support services for PD
caregivers .
9) increasing media coverage of genetic and biochemical
research on the root cause of the various forms of Parkinson's
10) developing coordinated fund - raising events at all
levels, especially during World, National and local Awareness Month
activities each
I think that a panel discussion format TV broadcast SERIES
on Issues in Conquering PD is now a high priority. It could include a
roundtable discussion among PWP's on the above, and other issues. There
must be numerous PBS-affiliated or University-affiliated TV stations who
would be inerested.
Michel,the hope that I have for a cure for PD, and the vision
I share with Michael Fox and Muhammad Ali, that TOGETHER WE WILL FIGHT
FOR THE CURE, is still flying high as my guiding dream.
Your letter has helped me to have deeper faith that at age 49, I
won't have to see the rest of my life destroyed by the PD monster.
Sincerely
Ivan
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses 06 deg. F :-)
********************************************************************
On Thu, 7 Jan 1999 23:48:36 -0500 Michel Margosis <[log in to unmask]>
writes:
>Dear Ivan:
>
>It is difficult to read the truth behind all that anger; I am not
>saying
>it is not justified, but perhaps the actions and reasons of PBS ought
>to
>be verified first.....
