RTK.NET Mail 138348   Apr  4 18:04:33 1996


Greetings!  I was going to wait to respond to your message until I received
a written set of follow-up tips from PAN, but my mail service has occasionally

been returning mail, and my last mailing from the Parkinson's Action
Network met with that sad fate.

I think the first thing you need to do when a representative sends a supportiv
e
but non-committal response like the one you received is to call her or his
legislative assistant for health and ask why.  Then if you know how to
respond to those concerns or hesitancies, do so on the phone or set up a
meeting with that staffer or with the representative--I believe it's
usually most important to meet with the staffer when the goal is to educate
your rep. about the legislation, the scientific potential, and Parkinson's
disease; when the goal is to be sure that each representative has personal
contact with someone with PD in order to begin to appreciate the impact of
the disease, then it is more important to meet with the rep. personally.  If
you're not sure how to respond to the concerns raised, call PAN or some of the

very helpful stars in the Udall bill effort such as Jim Cordy.

It's common for a representative to say she or he will look favorably upon
the bill but evade the issue of co-sponsoring.  It's important then to make
the point that the UDall bill died in committee during the 103rd congress,
and a key part of the Parkinson community's efforts to get the bill before
both houses is to get as many cosponsors as possible to demonstrate that this
bill has widespread support and that as one of your constituents, you are
respectfully urging him or her to make that commitment.

I met today with the Leg. Asst. for Labor and Human Resources for my
congressman, Steny Hoyer.  While he may vote for the bill if it comes before
the House, he has taken a strong stand against earmarking money for
particular diseases in the legislative and appropriation process, because
he believes that the scientists should be making those decisions, not
the legislators.  I'll keep trying, but I don't expect that my attempts to
persuade him into becoming a cosponsor.  But I did ask what he would do in
order to support greater funding for Parkinson's research if he wasn't
willing to sponsor direct legislation.  I received a number of suggestions
which I plan to follow-up on, and I think that if others did some of these
things, it could be one of many avenues to greater awareness and action:

1)  They offered to raise questions I submit to them when the head of NIH
testifies on the FY97 budget request.  This not only insures that Parkinson's
disease will be brought up in the discussion, but it also means that I will
get a written response to my questions from Dr. Varmus (I hope I'm spelling
his name right).  These can be used in future follow-up letters reminding
legislators of the importance of Parkinson's research or in letters to
newspaper editors.

2)  She suggested that I find out about upcoming issues, hearings, and
testimonies and make appointments to meet with the staffers of other
appropriate committee members, even if I could not round up a constituent
to come with me.  Not everyone lives as close to D.C. as I do, but others
could get the 800 number for the capitol switchboard (sorry I don't have
it on me) and ask to speak with the legislative assistants for health of
those committee members.  Letters from non-consituents are easier to ignore
than a telephone conversation or a personal visit.

There were other suggestions as well, but these were a couple of the strongest