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Kinda makes me sorry I missed it. D.C. isn't that far from
Connecticut. Sounds like this forum was the best, most
productive and exciting ever. Forgive my ignorance, but I'm
presuming that this is an annual event held every June? If
so, I'll be there with bells on next year...    Carole

--- janet paterson <[log in to unmask]> wrote:
> At 10:43 PM 2000/06/29 -0400, Ken Aidekman
> <[log in to unmask]> 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
>
=== message truncated ===


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