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.
>>
>>
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