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.

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.

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.

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.

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.

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.





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.