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Dear List Members:
How extraordinary to see/hear all this in-fighting spurred by the news =
that a well-known young man has PD. Clearly, the feelings of this group =
are complicated. We feel sadness and empathy, but in the past few days =
we have also expressed resentment, anger, and frustration. All of these =
emotions are valid responses to the news. The question is not how should =
we feel, but what should we do?
Instead of grousing about all the inaccuracies of PD reporting, each of =
us who feels motivated can take the opportunity to set the record =
straight. How? Coming from a public relations background I see this =
crisis as a terrific opportunity, not for damage control but for =
utilizing public interest - however motivated - in Michael J. Fox=92s =
revelation. The local 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 =
experiences. While you may not ordinarily wish to focus on your =
condition, the Fox story is a natural lead in. Share basic information. =
Encourage questions. Talk about the vast spectrum of symptoms =
experienced by others, treatments, the critical need for more research =
dollars. Respect your audience enough to educate them.
Ready for more? If you feel comfortable doing so, write a letter to the =
editor of your town=92s newspaper drawing attention to the fact that =
local citizens are dealing with PD every day and that as baby boomers =
age, this devastating disease will affect greater and greater numbers. =
Or call your 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 you feel would be the best =
spokespersons. Include caregivers and/or local, well-respected medical =
professionals.
If you take on this challenge, be advised:=20
You need clear, correct information. For example, the article provided =
on-line at www.mediconsult.com titled "Parkinson=92s Disease: Hope =
Through Research" isn=92t perfect (e.g. it doesn=92t discuss =
pallidotomies, DBS or Tasmar), but it provides a fairly comprehensive =
overview.=20
Have 2-3 points in your own mind that you would like to get across. Keep =
them short and sweet.=20
Offer current printed information, 800 phone numbers to national =
organizations 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.=20
Remember: Despite your best efforts, the reporter is working his/her =
own angle. The story may not come out exactly as you imagined, but a =
sensitive 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 journalist immediately.=20
Don=92t scream. Instead, 1) tell them how much you appreciated the =
report, and let them know that (here=92s where the PR background comes =
in,) 2) given their high standards of journalism, you know they=92d want =
an inaccuracy brought 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 =
ferret out accurate information on this complex, puzzling disease and =
consider how many experts in movement disorder differ in their points of =
view.=20
There, I=92d say that was my two-cents but it=92s more like a quarter.=20
Hilary - partner to Len 62/4
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<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D3>
<P>Dear List Members:</P>
<P>How extraordinary to see/hear all this in-fighting spurred by the =
news that a=20
well-known young man has PD. Clearly, the feelings of this group are=20
complicated. We feel sadness and empathy, but in the past few days we =
have also=20
expressed resentment, anger, and frustration. All of these emotions are =
valid=20
responses to the news. The question is not how should we feel, but what =
should=20
we do?</P>
<P>Instead of grousing about all the inaccuracies of PD reporting, each =
of us=20
who feels motivated can take the opportunity to set the record =
straight. =20
How? Coming from a public relations background I see this crisis =
as a=20
terrific opportunity, not for damage control but for utilizing public =
interest -=20
however motivated - in Michael J. Fox’s revelation. The local =
angle is a=20
natural, but only if we seize the day! This window of opportunity =
will=20
probably only be open for couple of weeks.</P>
<P>One-to-one, speak with friends and colleagues about your own =
experiences.=20
While you may not ordinarily wish to focus on your condition, the Fox =
story is a=20
natural lead in. Share basic information. Encourage =
questions. Talk=20
about the vast spectrum of symptoms experienced by others, treatments, =
the=20
critical need for more research dollars. Respect your audience =
enough to=20
educate them.</P>
<P>Ready for more? If you feel comfortable doing so, write a =
letter to the=20
editor of your town’s newspaper drawing attention to the fact that =
<STRONG>local</STRONG> citizens are dealing with PD every day and that =
as baby=20
boomers age, this devastating disease will affect greater and greater =
numbers.=20
Or call your local newspaper, cable TV outlet, and/or radio station to =
suggest=20
that this national story has a local "hook" in your own =
experience. If=20
you are a part of a support group, suggest an interview with two or =
three of the=20
people you feel would be the best spokespersons. Include caregivers =
and/or=20
local, well-respected medical professionals.</P>
<P>If you take on this challenge, be advised: </P>
<P>You need clear, correct information. For example, the article =
provided=20
on-line at <A=20
href=3D"http://www.mediconsult.com"><STRONG>www.mediconsult.com</STRONG><=
/A>=20
titled "Parkinson’s Disease: Hope Through Research" =
isn’t=20
perfect (e.g. it doesn’t discuss pallidotomies, DBS or Tasmar), =
but it=20
provides a fairly comprehensive overview. </P>
<P>Have 2-3 points in your own mind that you would like to get across. =
Keep them=20
short and sweet. </P>
<P>Offer current printed information, 800 phone numbers to national=20
organizations and/or good website addresses to reporters. Remind =
them that=20
even much that’s on-line is already out-of-date.</P>
<P>Plug local support groups. </P>
<P>Remember: Despite your best efforts, the reporter is working =
his/her=20
own angle. The story may not come out exactly as you imagined, but a =
sensitive=20
reporter will want to be informed and to pass along accurate news.</P>
<P>By the way, if you have heard something in a news report that you =
know to be=20
false, take a deep breath, check your facts, and call or e-mail the =
journalist=20
immediately. </P>
<P>Don’t scream. Instead, 1) tell them how much you =
appreciated the=20
report, and let them know that (here’s where the PR background =
comes in,)=20
2) given their high standards of journalism, you know they’d want =
an=20
inaccuracy brought to their attention. 3) Correct the =
misinformation. =20
4) As above, offer a follow-up, local story on PD.</P>
<P>Clarity and patience are important. Remember how long it took you to =
ferret=20
out accurate information on this complex, puzzling disease and consider =
how many=20
experts in movement disorder differ in their points of view. </P>
<P>There, I’d say that was my two-cents but it’s more like a =
quarter. </P>
<P>Hilary - partner to Len 62/4</P></FONT></DIV></BODY></HTML>
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