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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 > >>