Ivan, Anne R. 'n All.....
WHAT exquisite timing ya had in posting a much-needed, and pertinent
"10 Agenda Items list, Ivan!
On Saturday, Jan. 16, the Tri-Valley PD Support Group at
Encino Hospital is hosting a panel discussion at our
general meeting with guest speakers who are staff reporters
for 2 major local daily newspapers (errr.... actually the ONLY
local dailies in L.A. at this time). (For those in the L.A. area
who may wish to attend this meeting, I'll include info at the end of
this post) <ALL welcome!>
For the past few weeks I've been beating my brains out trying to come
up with such a PD-Agenda list to use as a CORE of
issues to present to the press, but found myself bogged down because
I'd never addressed ALL PD-related needs and
ssues in toto.
It has been SUCH a struggle for me to narrow my focus to a workable
number of items to list - a SUCCINCT number.... (It appears I've been
suffering a case of "Couldn't see the forest
for the trees syndrome!) <smile> The Agenda List will serve very
well, tho, in presenting the core issues to address at our meeting.
Personally, I think we should fine-tune Ivan's agenda as much as
possible (tho Ivan did SUCH a terrific job, that it looks like he
covered the most important items!) to make sure no vital PD-issue has
been overlooked. Then the final draft of such an agenda should be
made available to the major PD Organizations as representing the
voice of the greater Parkinson's Community. And THEN every effort
should be made to see that the Agenda is shared by as many regional
and local PD support groups as possible.
Information about Tro-Valley PD Support Group's "Meet the Press"
meeting:
WHAT: "Parkies Meet the Press"
WHEN: Saturday, January 16
WHERE: Encino Hospital
16237 Ventura Blvd.
Encino, CA (Greater Metropolitan L.A. Area)
TIME: 1 to 3 p.m.
NOTE: Post-meeting, we often drop by a nearby Deli for
dessert or an early supper.
DIRECTIONS: Encino Hospital is one long block east of
Hayvenhurst, on Ventura Blvd. Parking is ample
and free.
QUESTIONS? Call Barb Mallut, at (818) 705-3037
-----Original Message-----
From: Ivan M Suzman <[log in to unmask]>
To: Multiple recipients of list PARKINSN
<[log in to unmask]>
Date: Sunday, January 10, 1999 12:36 AM
Subject: 10 Agenda Items for the Millenium
>Dear Members of the International List (and lurkers!),
>
> For those among us who are filmed for the Lehrer News Hour, or
for
>any radio or
>television broadcast, I have come up with 10 public policy issues,
and
>funding issues,
>that we PWP's and CG's face...
>
>What do Listmembers think are important issues to raise?
>What other issues are important?
>
> Here are my 10 agenda Items. What are yours?
> Your comments, please? Let's generate a discussion...
>
> Please Note : PWP - Person with Parkinson's; CG - Caregiver
>
>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.
>
> I can envision that a panel discussion would be an
>excellent format for a TV broadcast
>SERIES on "Issues in Conquering PD" . It might include a
roundtable of
>leading PWP's and CG's on the above, and other issues. Each
programme
>might add specially invited guests.
>
> Are there any TV stations out there who are PBS-affiliated or
>University-affiliated who would be interested in discussing my
ideas?
>Although it's unclear what will be covered in 1999, I hope this
Agenda is
>a good starting point in that quest.
>
>
>Sincerely,
>Ivan Suzman (207) 797-8488
>
>^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
> Ivan Suzman 49/39/36 [log in to unmask] :-)
> Portland, Maine land of lighthouses 25 deg. F :-)
>********************************************************************
>
