Parkinson's Action Network (PAN) Forum 1996 - Day 1

1996: From Invisible to Invincible!
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I know this is late (it is now Day 3), but here are some of my notes
from Day 1.

In general, the emphasis this year is more on the actual lobbying for
the Udall bill, and less on the "how-to." This year, we have a Udall
bill "War Room" in the Hotel Washington for the duration of the
Forum, complete with impressive charts on the wall; e.g., listings
of all congressional members with their status re the bill. The room
is equipped with conference table, PC & printer, telephone, stacks of
"leave behinds," etc.

Although most attendees have already made appointments for Days 2 and
3, the phone lines were hot today with calls to set up additional
meetings. Yes, it is possible to arrange a meeting that quickly when
you explain you are in D.C. for a limited time. Bob Martone even
managed to get a commitment to co-sponsor over the phone today!

This feisty group now has appointments to personally lobby dozens of
Members of Congress over the next two days.

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Here is Day 1's schedule:

(From the Hotel Washington)
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* Joan Samuelson, PAN President, gives introduction. (Sorry, I missed
it; bad traffic to DC & slow Metro.)

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* Michael Claeys, our new Network Community Outreach Coordinator,
gives overview of Advocacy Guide and schedule. (Missed most of that
also.)

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* but Group, all fired up, takes early break to make phone calls to
set up additional appointments.

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* Morton Kondrake, Editor, Roll Call newspaper (read by all "inside
the Beltway"). You may have seen him on TV on "The McLaughlin Group."
His wife, Millie, is PD dx 9 years. We had reprints available of his
excellent article on PD, "Cruel and Unusual" from the April 1996 issue
of *The Washingtonian*.

Talked about Udall bill lobbying strategies.

Noted that with key senators retiring at the end of this term,
including our champion Hatfield, we need to make progress this year.

The most effective thing you can do at meetings is "tell your own
story." Genuine emotion, including crying, works; makes an impression.
Stress the impact on economic life; the country's and yours. And PD is
a *conquerable* disease.

Note that this bill will *save* money; it is a great return on
investment.

Stress optomistic approach; the money appropriated is not "sand down a
rathole" but will pay dividends to the country's economy, as well as
the individual's.

Use the chart which shown the disparity in money spent on research for
individual diseases; e.g., $1100/per patient for AIDS down to $26 for
PD.

Overcoming objections:

"Earmarking" or micromanagement of NIH: See above chart, you
(Congress) are already doing this; we just want to bring PD up to
parity.

Fetal tissue issue: Udall bill does not authorize any spending for
this. This is a separate issue from Udall bill.

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* Dr. Frank Collins, Ph.D., Vice President, Neuroscience, Amgen

Talked about neurotropic factors, and GDNF (Amgen's development) in
particular.

Gave some background on neural cells in general. We are born with
twice as many neural cells than survive. The cells are always poised
to die without neurotropic factors, which nurture the cells.

Neurotropic factors are *different* for individual neural cells, which
is important to PD, since we know which cells are dying, unlike other
diseases such as Alzheimer's. Therefore, Amgen could design GDNF as a
nuerotropic factor targeted specifically for PD neurons.

Clinical trials in humans are scheduled to begin this year. Might be
available as a proven therapy within 4-5 years. (With sufficient
funding for NIH research.)

Showed a number of slides, which showed that GDNF protects neurons
from multiple toxicities, and repairs demanged neurons (in the animal
model).

Since GDNF is a protein which cannot cross the blood-brain barrier,
the method of delivery currently being used is a surgical implant, but
the site is a ventricle. To maintain the GDNF, an injection is given
once a month, by means of a shunt at the surgical site (an established
technique).

Showed some impressive videos of the animal model: Rhesus monkeys
normal, then with MPTP-induced unilateral PD symptoms, then post-GDNF
treatment. The extreme PD conditions before were apparently almost
eliminated post-GDNF.

Stated that when L-dopa and GDNF are combined, the L-dopa dosage may
be greatly reduced.

Apparent GDNF benefits: performance improvement; reduction of
degenerative process.

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Another PAN '96 innovation:

After lunch, and short talks by Joan and Mike on the legislative
process, we broke into small groups to work on "strategy sharing."
Each group had a facilitator (an alumni of previous Forums) with
proven lobbying success.

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(Evening; from the National Press Club)

Group "Invisible No More" dinner:

We saw an excellent and moving video about Mo Udall, which had been
made for and shown at the recent Parkinson's Awards Dinner.

Brad Udall, son of Mo Udall and Chair of PAN, then shared some
amusing Mo Udall stories. On the serious side, he also talked briefly
about the economics of PD.

The final order of business was the presentation of the first 'Louis
Fishman Award for Advocacy on behalf of Parkinson's,' which of course
went to Jim and Deborah Cordy (to a standing ovation).

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PD List participants attending include (hope I didn't miss anybody):

[log in to unmask] (Ken Aidekman)
[log in to unmask] (Sherri Cave)
[log in to unmask] (James & Deborah Cordy)
[log in to unmask] (Maryhelen Davila)
[log in to unmask] (Bob & Nancy Martone)
[log in to unmask] (Margaret Monty)
[log in to unmask] (Barbara Schirloff)
[log in to unmask] (Mary Yost)


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Margaret Monty
[log in to unmask]
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