hi all
At 13:50 1999/04/28 -0500, terry wrote:
>I'm new to this list. Only a few months.
>So maybe this has been discussed before.
yep
a lot
dis-unity among the pd orgs has been a sore point
with a lot of people with parkinson's disease
>The credit card money goes to Parkinson's Alliance.
>The PD handbook is from the American P D Association.
>The drug book was from National Parkinson's Foundation.
>How many groups are there? These are all USA groups, at least
>the bottom two. When we raise money who should it go to?
>Is there a lot of duplication and waste of money with so many groups.
in the usa, as far as i know
the upf [chicago] and the pdf [new york] have joined forces
which still leaves
the apda [new york]
the npf [florida]
and more recently
pan
[formed to drum up unified political clout to get the udall bill passed?]
and
parkinsonalliance
[formed to drum up unified political clout to get the udall bill passed?
and now sponsored by the npf?]
and
?
in canada
the pfc is the only national org
and seems to be in limbo at the moment
to me
the fact that
michael j. fox [canadian with u.s. fame]
has not yet joined his name with a pd org
speaks volumes
as a former mid-atlantean
i have watched the pd org antics
on both sides of that pond at a distance and with some sadness
however
as a current canadian resident
the north american pd org antics
are now hitting a more sensitive nerve
in bald, bold [and purely personal] terms
it seems to me that most if not all of the pd orgs
seem to have their priorities askew
when the investment management and the public and media relations
apparently become more important than the person with parkinson's
when the prestige of the monied contributors
apparently become more important than the person with parkinson's
when the wealth and the power of the corporate contributors
apparently become more important than the person with parkinson's
[whatever happened to the concept of anonymous charity
espoused by one of our great prophets?]
terry
excuse me if i started a 'rant'
it's not directed at you
your question goes to the heart of what we are trying to do here
this grassroots list of plain ordinary people with parkinson's
displays more unity and provides more support
[in my humble opinion]
than any pd org
JAnet of PIEnet
janet paterson - 52 now /41 dx /37 onset - [log in to unmask]
613/256/8340 - po box 171/almonte/ontario/k0a 1a0/canada
Scan some of My Past Posts at:
http://www.newcountry.nu/pd/members/janet/index.htm
Mine the PD List Archives at:
http://james.parkinsons.org.uk/
Cull Nine Million Pub-Med Medical Studies at:
http://www.ncbi.nlm.nih.gov/PubMed/
Comb the 'People With Parkinson's' Web-Ring at:
http://www.webring.org/cgi-bin/webring?ring=parkie;list
