Dear Barbara
Thank you for your accolade - I havent done anything - yet. It is only th=
anks
to the leadership and guidance of people like yourself, and Ivan,  that I=
 can
even begin to think of playing an active role in the fight for Parkinson'=
s
Awareness- the ultimate aim of which is, of course, the CURE. I have cont=
acted
a local radio program called "Issues" and I'm hoping to hear  from them s=
oon -
be assured I shall use  your  outline below to good advantage, or at leas=
t I
shall try to! =

Thanks,
Hilary

[log in to unmask] wrote:
> =

> Hi Ivan and Hilary,
> =

>         Here's what I'm doing in KC.   I sent the following to a number=
 of support
> group leaders, board members, and staff in the Greater Kansas City area=
 just
> now. Thanks as always for your leadership.  BTW, I see that Kathryn Hol=
den has
> joined your list--I believe from the way she handled herself here on th=
e
> media, that she is an outstanding spokesperson who knows how to educate=
 and
> understands PD from much more than just the nutritional angle.
> =

> Barbara Blake-Krebs  58/14
> [log in to unmask]
> >>
> Hi all,
> =

>         With Michael J. Fox's disclosure, the time is  ripe to educate =
the public per
> the post below.  Why not make a holiday gift to ourselves by personally=

> helping to increasing awareness.  I will be happy to provide info from =
my data
> files and assist in a local effort.  Please email me back how you are a=
ble to
> help.
> Thanks.
> =

> Barbara Blake-Krebs
> [log in to unmask]
> <<
> Instead of grousing about all the inaccuracies of PD reporting,
> each of us who feels motivated can take the opportunity to set the reco=
rd
> straight.  How?  Coming from a public relations background I see this c=
risis
> as a terrific opportunity, not for damage control but for utilizing pub=
lic
> interest - however motivated - in Michael J. Fox=92s revelation. The lo=
cal angle
> is a natural, but only if we seize the day!  This window of opportunity=
 will
> probably only be open for couple of weeks.
> =

> One-to-one, speak with friends and colleagues about your own experience=
s.
> While you may not ordinarily wish to focus on your condition, the Fox s=
tory is
> a natural lead in. Share basic information.  Encourage questions.  Talk=
 about
> the vast spectrum of symptoms experienced by others, treatments, the cr=
itical
> need for more research dollars.  Respect your audience enough to educat=
e them.
> =

> Ready for more?  If you feel comfortable doing so, write a letter to th=
e
> editor of your town=92s newspaper drawing attention to the fact that lo=
cal
> citizens are dealing with PD every day and that as baby boomers age, th=
is
> devastating disease will affect greater and greater numbers. Or call yo=
ur
> local newspaper, cable TV outlet, and/or radio station to suggest that =
this
> national story has a local "hook" in your own experience. If you are a =
part of
> a support group, suggest an interview with two or three of the people y=
ou feel
> would be the best spokespersons. Include caregivers and/or local, well-=

> respected medical professionals.
> =

> If you take on this challenge, be advised:
> =

> You need clear, correct information. For example, the article provided =
on-line
> at www.mediconsult.com titled "Parkinson=92s Disease: Hope Through Rese=
arch"
> isn=92t perfect (e.g. it doesn=92t discuss pallidotomies, DBS or Tasmar=
), but it
> provides a fairly comprehensive overview.
> =

> Have 2-3 points in your own mind that you would like to get across. Kee=
p them
> short and sweet.
> =

> Offer current printed information, 800 phone numbers to national organi=
zations
> and/or good website addresses to reporters.  Remind them that even much=
 that=92s
> on-line is already out-of-date.
> =

> Plug local support groups.
> =

> Remember:  Despite your best efforts, the reporter is working his/her o=
wn
> angle. The story may not come out exactly as you imagined, but a sensit=
ive
> reporter will want to be informed and to pass along accurate news.
> =

> By the way, if you have heard something in a news report that you know =
to be
> false, take a deep breath, check your facts, and call or e-mail the jou=
rnalist
> immediately.
> =

> Don=92t scream.  Instead, 1) tell them how much you appreciated the rep=
ort, and
> let them know that (here=92s where the PR background comes in,) 2) give=
n their
> high standards of journalism, you know they=92d want an inaccuracy brou=
ght to
> their attention. 3) Correct the misinformation.  4)  As above, offer a =
follow-
> up, local story on PD.
> =

> Clarity and patience are important. Remember how long it took you to fe=
rret
> out accurate information on this complex, puzzling disease and consider=
 how
> many experts in movement disorder differ in their points of view.
> =

> There, I=92d say that was my two-cents but it=92s more like a quarter.
> =

> Hilary - partner to Len 62/4
> >>