 |
 |
Last summer when the PPAA was crossing the country to raise awareness about PD and money for research, I was in charge of organizing both an educational seminar as well as a day of "fun" to celebrate the team coming through Chicago. I contacted both via phone as well as visited most of the support groups around Chicago to invite them to participate. The team was to be kayaking into Chicago via the Chicago River and our party (the fun day) was scheduled right on Michigan Avenue - next to one of the bridges crossing the River. My idea was that members of each group from the area meet on that day - with signs, placards, etc., individualized by each group with their own messages of welcome to the team - at the River to have a huge welcoming committee with a parade across the bridge to our party area. This would have been a TV event (I had two of the networks very interested in filming it for their newscasts that day) for PD patients and their families on that Sunday. As of the Friday prior to the weekend's events, NOT ONE of the groups was planning on participating so I had to call the networks to cancel their crews. Additionally, notices and invitations were sent to all members/readers of the PDF News inviting them to the Saturday educational seminar and the Sunday day of fun. We had a TOTAL of 34 tickets sold for the Sunday event which included a chefs' tasting (with chefs from 9 area restaurants preparing and serving their specialties - and EACH of the chefs donated not only their time but all their foodstuffs), a Puttin' for Parkinson's booth (with a donated putting green designed and built just for us by a local golf club), magicians and three bands (who each donated their time). Luckily, we had enough walk-by traffic on Michigan Avenue to carry the day. Maybe I just didn't go about contacting/encouraging participation of the local support groups in the right way. I'd love to learn how. Jeanne Lee-Rosner PDF-Chicago ----- Original Message ----- From: Walter O. <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, January 30, 2000 3:53 PM Subject: Reply to: Pass the Baton > After you read this, you may ask, "Are these your > ideas, or are you just ill advised?" They say ideas > come frrom one of three sources, from the > supernatural, from others,, or from within > ourselves. I don't lay claim to divine messages, > neither are these thoughts solely frrom within > myself. Rather, they are a confabulation from > within myself and what I hear from other PD > support group people. > There is a perceived need for better networking, > between the larger organizations and the local > Support Group (PWP, caregivers).Yesterday I met > with several relatively well informed leaders of a > PD support group.Their questions and comments > made me observe that they knew even less than I > about what is going on in the upper circles of those > who represent us. Are you satisfied with the > comunication and support you are getting at the > local level from these organizations. Legally, or > informally how can we increase our representation > at the higher levels of leadership. > Are the newsletters we receive interesting and > informative, or are they just house organs. When > were you or your support group asked for advice, > or helped in a practical way? Do you believe that > it is time to get professionals to represent us, using > principles of marketing, corporate identity and > awareness crusades,e.g.See the Avon Breast > Cancer Awareness Crusade material on the web > page. Why doesn't the upper leadership involve > local groups in planning agendas? > Let's open up the dialogue and comments. > Arguments are welcomed. > > > _________________________________________ > This message was sent using Conectiv.net WebMail. > http://webmail.conectiv.net/ >