Re: forum thoughts

[janet paterson <janet313@xxxxxxxxxxx>]

At 10:43 PM 2000/06/29 -0400, Ken Aidekman <Quabidt@xxxxxxxx> wrote:
>Wouldn?t it be great if there was a national "Parkinson?s Convention"?
>An event in which PWPs, their families, scientists, neurologists,
>advocates and professionals from all the foundations could get together
>and exchange ideas about living with PD and what should be done to
>conquer it.  The Michael J. Fox Foundation for Parkinson?s Research
>Public Policy Forum is awfully close to becoming that event.
>Now if we can only find a way to abbreviate the title ...

seems to me that the Fox Forum might be the ticket.
mjf's name is now indelibly attached to the pd cause
across all layers of our [north american at least] society.

>The Forum is about advocacy.  It offers a well-rounded educational
>experience that touches nearly every aspect of presenting our
>community?s case to our elected representatives.  It?s a complete
>training program that goes from concept, to role-play to face-to-face
>interaction with people in Washington who have quite a bit to say about
>our future...

the first time i heard about it
[on this list]
i thought, it's just u.s. politics, ho-hum, boring ...
but then i learned more and heard from participants
[on this list]
and found out what an energiser it is for everyone involved
not only the participants but for those of us who just hear about it
[on this list]
it's the only 'big' pd event that is truly run by us
the people with parkinsons for us
the people with parkinsons
it is cross-city, cross-state, cross-pd-org, cross political party ...
name a line separating us from one another
and this event crosses it

>Since the first gathering in 1994 the Forum has always been more than
>just about political action.  It?s also about meeting people.  Not just
>?people? but creative, friendly, intelligent, determined and energetic
>people who work together for a common cause.  They may not be your
>family members or your best friends but if you want to spend time around
>some of the best humanity has to offer, you will find them at the Forum.
>
>At the first Forum I met Margot Zobel, the woman who conceived of the
>Parkinson?s Unity Walk and continues to be its heart and soul.  I also
>met Alan Bonander, the first official host of the virtual Parkinson?s
>community and its foremost authority on the subject.  I met Will
>Johnston, Fred Ziess, Terrie Whitling, Maryhelen DaVilla and many others
>who continue to hold a special place in my heart.
>
>The next year I met The General, Jim Cordy, and advocate-extraordinaire
>Lupe McAnn, PD publisher Barry Green and still more new faces.  Soon Bob
>and Nancy Martone joined the group along with Carol Walton and Mary Yost
>of the illustrious California contingent.  Then Nicky Gall, Perry Cohen
>and Dale Severance and the Pennsylvania Haines? and the New York Fazios
>and still more who will scold me for leaving them out.

what better way to share our pd
than to work together to wrassle it to the ground?

>The Forum is a spawning ground for advocacy and fundraising: the Unity
>Walk, The Parkinson Alliance, The Parkinson?s Coordinating Committee and
>numerous other partnerships and initiatives.  It?s a fertile spawning
>ground for plans and ideas.
>
>With each Forum a new Freshman Class arrives to reinvigorate the
>old-timers and expand our growing circle of friends.  The alumni trade
>war stories and complain that it ain?t what it used to be, but the new
>recruits bring needed energy to this unique club.  It?s a club that
>exists to bring about positive change but whose members haven?t
>forgotten how to maintain a sense of humor and have a fun time.
>
>A very special lady started this club against all the odds and with
>minimal financial support.  There would be no Forum if it weren?t for
>Joan Samuelson.  Her inspiring example drew Senators Hatfield, Wellstone
>and McCain to our cause along with Representatives Upton, Waxman and
>Malone.  The "Greatest of All Time" recognized our efforts and saw fit
>to speak out on our behalf.  His arrival on the scene demonstrate
>conclusively that we were "Invisible No More".  Together, after more
>than three years of tough choices, hard-won cooperation and dedicated
>effort, we passed the Morris K. Udall Bill, the first legislation
>promoted by the Parkinson?s grass roots advocacy movement.

i found it an inspiration
simply to be on the sidelines, particpating by proxy, as it were.
the dynamics of the energy and passion generated were [and are] awesome.
the first time i saw a video of joan speaking at one of the forums
shivers went down my back with admiration and pride
in our 'sister' parkie.
since then joan samuelson has been my hero.
to have her join forces with mjf is almost more
than i could have hoped for

>And now there?s a promising young rookie in the club.  Michael J. Fox
>earned his activist wings on Capitol Hill last fall.  Monday night he
>gave us a powerful boost by reaching out to embrace each and every Forum
>participant.  It was a simple act for Michael but it reinforced in each
>of us, the wide-eyed rookies and the jaded veterans alike, the great
>importance attached to our seemingly mundane efforts....

wonderful!
the 'ordinary' people
not the power brokers or the ladder-climbers
are the key and the strength of any grassroots effort
mjf was 'just one parkie hugging another' for those moments
there is nothing mundane about sharing our love for each other
there is nothing more important

>Recognition, gratitude and respect . . . it?s powerful currency.  Life
>can be pretty ordinary when you don?t have these things.  With them you
>can move mountains ...

yup
from my vantage points over the past five years
both from the mid-atlantic and from the great white north
the mountains aren't just moving ...
they are starting to crumble ...

>Sometimes it seems there is a natural law requiring this world to be
>made up of equal parts joy and pain.  Paige Bremer gave inspiration and
>joy to many.  We looked forward to seeing her at the Forum but it was
>not to be.  The circumstances of her absence were a reminder of what
>drew us to Washington in the first place.
>Paige disguised her pain so well that it seemed not to exist. Her
>extraordinary presence will be sorely missed.

i hadn't met her in 'three dee'
but was impressed as heck with her website,
which seemed to glow with her personality.

i am finding it ironic after posting 'coulda' this morning
that my head is filled with those 'if only's all over again
imho, the key has to be - what are we going to learn from this?

thanks, ken, for sharing all of this with us

janet

janet paterson
53 now / 41 dx / 37 onset
613 256 8340 / PO Box 171 Almonte Ontario K0A 1A0 Canada
visit my website "a new voice" at: ";