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All, How does one go about starting a group? We have a radio station here that has a chat line and I called and ask about the nearest group and got a call back saying the nearest group was Columbia,Mo. which is 40+ away and on a very dangerous highway. I thought maybe I could start a group here. HELP!! Shirley -----Original Message----- From: Parkinson's Disease Foundation <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Friday, February 04, 2000 8:54 AM Subject: Re: Reply to: Pass the Baton >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/ >>