>
> Dear Ivan,
> I like your list. I wish I had had it in my hands 4 days ago, when I faced the
> Lehrer News Team.
> But that has been and gone. Now we must look forward to the next time. I see
> your 10 points falling into 5 main categories, which sometimes overlap:
> 1 Fundraising
> 2 Research
> 3 Publicity
> 4 Care
> 5 Politics
>
> 1 Fundraising
>
> a Coordinate events for April - Parkinson's awareness month
> b Philanthropic, private, federal, state or provincial, local funds for PD
friendly housing, long term, qualified home care,
appropriately paid
> c tracking the fate of the Udall funds: what has happened to the $100 millon
> we were promised?
>
> 2 Research
> a During April, Parkinson's awareness month, should co-ordinate fund raising
> events for research into causes and possible cures for PD.
> b Pressure NIH to use the Udall funds appropriately ie for PD research directly
> c Prioritize media coverage of research, in molecular, biochemical and
cellular fields, into the various forms of Parkinson's
>
3 Publicity
a Reshaping public and media perceptions of the 'typical PWP'
and increasing
visibility, especially on TV.
b Planning public information campaigns, especially through TV
and radio about
medical and surgical options available.
c Prioritizing media coverage of research in biochemical,
cellular and genetic
research on the different types of Parkinson's.
4 Care
a Public awareness of the need for quality caregivers,
decently paid
b See Fundraising, point b
c Establishing cris prevention plans as per Ivan's list
d Inner city and rural mobile screening clinics
e PWPs as consultants as per Ivan's list
f Creating respite care and support services for exhausted and
worn out cgs
5 Politics
Mainly, the whole deal about whether NIH has been using the
Udall funds for
the exact purpose that they were intended. And where exactly
is the money going?
Basically what I have done is taken Ivan's wonderful and succinct agenda, and
rearranged it into a form that is easier for me to follow. There is some
overlapping, because of this. But there was nothing I could find to add, or
substansively change in any way.
Once again, I must say that I wish I had had this available to me when I did
the interview. Well, better luck next time. Thanks, Ivan, for all the help and
support you gave me then over the phone, and now for preparing this agenda so
that it is available for anybody else who is interviewed.
hiLary bLue
**************************************************************************************************
> Ivan M Suzman wrote:
> >
> > 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 :-)
> > ********************************************************************
