The following is the text of a speech that Bob Dolezal delivered this past
Saturday afternoon to an audience of 300+ potential Parkinson Alliance members
in Phoenix, Arizona. I normally don't send such lengthy messages to the list,
but this one is well worth the space. I was not able to attend, but if Bob's
public speaking skills are half as impressive as his writing, I'm sure he
rallied alot of people. Thanks Bob.
Also, since Jim's comments went onto the list late last week, the e-mails have
been rolling in from people who want to join the Parkinson Alliance! Thank
you to all of you who have contacted me. I look forward to working with all
of you. For those of you who have not yet joined, all that you need to do is
send me an email, or call toll-free (888)331-4673 with your snail mail
address, phone #s and a fax # if applicable. Please take the time to join
today.
Enjoy Bob's speech.
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Bill - dunno if you want to, but putting this on the listserv might be
helpful - it gives an idea, at least, of what the Alliance is doing.
Regards.
Bob
(I've tried to make it conform as closely to reality as possible - hence
the opening)
Well, we are now ten minutes into your first break, and my talk will take
seven minutes. So, if you really have to get up while I am speaking, it
won't bother me or hurt my feelings.
And if you believe that ...
I am here today as a representative of the newly formed Parkinson's
Alliance. The Alliance was created by a group of twelve Parkinson's
advocates with the disease, or with very dear loved ones who suffer, or
have suffered with it. It is intended to serve as a voice from the
Parkinson's community, for the Parkinson's community.
We met initially a few weeks ago in Miami, hosted by the NPF, to assess
the status of the "war against Parkinson's" and to come up with some ideas
as to what steps are needed to fill voids and solve problems.
We prepared a Vision statement and a Mission statement. We also created a
schedule, now underway, for meetings with the existing four major
organizations - NPF, APDA, PAN, and PDF - to discuss a comprehensive
"legislative agenda" and ask that it be carried forward with the greatest
possible inter-organizational cooperation.
The ALLIANCE is important to you, as caregiver or patient, because it is
intended to represent you, to be YOUR voice and act in your interest in
dealing with the other players in the Parkinson's community. If you are a
researcher, it is important because it can help secure the funds you need
to move forward.
Our first major undertaking will be to do all we can to make sure the Udall
bill is fully funded at $100 million for F/Y99.
The Udall bill is the single most important legislative action ever taken
for, and by, the Parkinson's community. I say BY the Parkinson's community
because I believe that Udall would not have passed without the perseverance
and dedication of the advocacy movement. And, just this past Wednesday,
Jim Cordy, who heads our group, testified before the House Appropriations
Committee, an honor accorded him because of the respect he has gained as an
advocate.
My own personal experience with advocacy illustrates how much we can
accomplish, if we just persist.
From the autumn of 1994, I worked closely with one of you, MH Davila, to
obtain the commitment of our senior senator, John McCain, to cosponsor the
bill. That finally came in May of 1996, after a year and one-half of letter
writing, e-mails, and calls to the senator's offices.
I hope you participated in that, for if you did you contributed mightily in
getting the bill passed. While we have no way of knowing precisely how
many hundreds - or thousands - called and wrote, we do know that a two-day
call-in campaign from Tucson jammed the senator's local switchboard.
But it was not until MH, Brad Udall and I met with two of the senator's
staff people, on May 16, 1996, and were about to be turned down once again,
that the Senator emerged from his office, introduced himself to each of us,
listened for about ten minutes, and then waved a hand in resignation and
said "Enough ... I'll cosponsor the bill."
MH and I, almost simultaneously, burst into tears. The senator's staff
sat in stunned silence. When I gathered my wits and stood to shake his
hand he whispered "No, no, that's not necessary," to which I tearfully
replied, "No, senator, I WANT to shake your hand." I would swear that
there were tears in the senator's eyes, too.
That was May, 1996. Soon, a persistent Mary Helen and some Phoenix cohorts
won over Cong. Shadegg and Haworth, giving us four of six, since Kolbe and
Pastor were already signed on. Stump and Salmon remain non-supporters.
A few months later I began to contact Sen. McCain's staff, to ask the
senator to become LEAD Senate sponsor for the majority party. There was
little interest. Clearly, with campaign reform his major goal, Senator
McCain would be busy during the remainder of the session. But Senator
Hatfield, the original Republican sponsor, was retiring, and someone of
stature was needed to replace him. What better person, I argued, than Mo's
friend and fellow Arizonan, John McCain?
Discussions continued for several weeks. "He is credible!" I argued.
His participation would make this a "truly bipartisan effort." And he
visits Mo, and knows of his condition - he can describe the disease to
fellow senators better than anyone else.
Then, using all the arguments at my command, I wrote an impassioned plea
to the senator to leap into the fray feet first and become lead sponsor. I
sealed the envelope and put it in my mailbox. Four hours after my postman
picked it up my phone rang - it was Sonya Sotak from the senator's office
calling to tell me the senator had decided to take on the challenge - he'd
be lead sponsor!
Now, how's that for postal service?
McCain's staff has not always, I suspect, been happy about that decision.
There have been problems coordinating the activities of the various
organizations as they carried their own agendas into the Congress. That is
understandable, for each organization has had its own approach, its own
style. Personality conflicts among the various organizations' leadership
exacerbated matters, and the senator's staff was frequently placed in the
role of an arbitrator, hearing different approaches from the PD
organizations. Who speaks for the Parkinson's community was a question
that never found one answer.
The Parkinson's Alliance was conceived, carried, born and nurtured because
of the faulty process I just described. A number of Parkinson's
advocates, who both observed and participated in the Udall campaign,
decided that, even with passage of the bill, the inter-organizational
relationships needed repair, and that it would best come from the advocates
themselves. Jim Cordy, with the slightest hint of hyperbole, calls the
Alliance the community's "conscience."
When NPF offered to host the Miami meeting, many on the Parkinson's
listserv began to question NPF's motives, as well as the motives of the
advocates. Wasn't this a sell-out to NPF? Aren't we being co-opted by
NPF?
No, not on your life. The advocates made it very clear in our acceptance
of the NPF invitation that we would be just as hard on NPF - if that seemed
justified - as on any other group or individual. NPF not only accepted
that condition, but in an intensive and exhaustive 4 day period NPF staff
performed beyond the expectations of any of us. Bill Turrene and Larry
Hoffheimer were active in assisting us, and passive in advising us. They
exerted no pressure whatsoever.
We also decided that we do not want to make the Alliance a formal
organization. We don't need another layer of bureaucracy. So, NPF is
currently handling the administrative and clerical work needed to run the
Alliance, since we have no staff, no funds, no bank account, and no office
space of our own.
So, where is the Alliance now? We are out gathering data and discussing
priorities and options with the 4 organizations. I will join Carol Walton
and Bob Martone in Santa Rosa next week to talk with Joan Samuelson of PAN.
APDA and PDF have been met with. Results to date are very encouraging -
leaders of the groups are actually talking about the need for greater
cooperation, and mention of a "summit" meeting has been made. With
appropriations for the Udall bill next in line, things look hopeful that
we'll present a united front.
What can you do? You can urge the representatives of the various PD
organizations to cooperate - we are all on the same page! You can call
and volunteer to help when, for eg., a call-in or write-in campaign is
mounted. All the information about how to contact the Alliance is
contained in your packet.
Patients and caregivers, we look to the men and women doing research to
find the cure. I don't know if that is realistic. But I am going to
believe that it is, and give them all the support I can. Let's give them
our support.
Parkinson's Alliance [log in to unmask]
1250 24th St. NW
Suite 300
Washington, DC 20037 1-888-331-4673
