INTRO
Some of you here are old enough to remember the movie Harvey (the one with the invisible rabbit),
it starred Jimmy Stewart. It was made
back in 1950, but replayed countless times.
Well, Jimmy is no longer with us, and Harvey has finally run out of
royalties the movie has earned him and has taken a very unusual job for a
rabbit. He has taken a job as a
spokesperson. There is only one problem,
however, he’s still an invisible rabbit that only certain special kinds of
people can see or hear. Luckily, he
found one right here among us, Jim B. So
here, making his appearance with Jim B’s help, is Harvey the Invisible Spokesperson
Rabbit.
(To Harvey) Harvey, this is a special group of people, they
are the Hilton Head Parkinson’s Support Group, but you have them at a
disadvantage—they don’t know what you are.
May I tell them?
(To the audience) Harvey is a pooka—a
Celtic fairy, given to various acts of mischief and to taking form as a larger
than life animal—in this case a six foot, three and a half inch rabbit. I know some pookas speak to all humans, but
Harvey is audible and/or visible to only a few kinds of humans—to drunkards,
crackpots, rumpots and the like. So, if
you’re able to see him just now, you may want to keep that under your hat. If Harvey were to show himself to all of you this
would be a big step for him, talking to all sorts of people—but he’s determined
to use me for a mouthpiece.
(To Harvey) So, Harvey,
congratulations, you have decided to become a spokesperson, but you haven’t
told me what for. Can you tell me
now? For PAN? What’s PAN?
Oh, the Parkinson’s Action Network
(To all) Uh-oh, now I know why Harvey
insisted on tagging along with me to this meeting. What’s that Harvey? This is your favorite kind of audience, I get
it.
(to Harvey) Tell you about me and PD? Sure.
(To all) I was diagnosed in 2009, and
started taking the usual assortment of drugs to control the symptoms. I decided also to work on my overall health. I had listened to what my neurologist said
was his number one recommendation—get an hour of exercise every day. So I started working on my overall physical
health, things like--getting enough sleep, developing better eating and drinking habits
(these are still a work in progress) and getting in the habit of exercising an
hour a day. I took up yoga, and I even
took up Tai Chi with some help from a friend or two. So, I really worked on myself, and I feel
lots better. In fact, I think that’s
what allowed me to keep working for three more years, but I had to stop this
past summer. So, now you know my story.
But the elephant is still in the
room, so to speak. We still have
questions about Parkinson’s, Harvey.
Maybe you can answer them.
(To Harvey) What questions?
1. Well, for one
thing, how quickly will this progress?
(To Harvey) No one knows?
(To all) Oh, Harvey wants you to know
research is going to tell
us.
2. Well, do we at
least know how to slow it down?
(To Harvey) We don’t?
(To All) Harvey says researchers
are getting closer to finding some effective therapies to slow it down.
3. I have a trembling hand and leg
and occasional loss of balance. What
else can I expect, Harvey? (pause)
(To Harvey) You don’t know…(listens)
(To all) But researchers are cataloging Parkinson’s effects.
4. Well, what about the cause of
those effects? What
causes Parkinson’s? (listens)
(To Harvey) We don’t know, huh? (listens)
(To All) Ah, but researchers are working on it.
5. What about a cure?
(To Harvey) A long way to go, you
say?
(To All) Oh, more research
is needed.
(To Harvey) Wow, with all this need to
know, things must be going great guns in Parkinson’s research, huh? (listens) They’re
not?!??
Is this Parkinson’s Action Network
working on it? (pause) What’s PAN’s mission, anyway?
It’s
the unified voice of the Parkinson’s community, advocating for better
treatments and a cure. In partnership with other Parkinson’s
organizations and a powerful grassroots network, it educates the public and
government leaders on better policies for research and an improved quality of
life for people living with Parkinson’s.
So what needs to be done about the research?
(To Harvey) You say there are three
big obstacles to making this research move ahead? And this is what PAN is working on.
What’s the number one hold-up? (pause, listening)
(To Harvey) Oops, that can’t be!
(to All) Harvey says eighty percent of clinical trials
are delayed due to the shortage of patients taking part? So, we have met the enemy and it is us. How do I get into a clinical trial?
Harvey says there are three things I
can do—ask my neurologist about trials, enroll in the Fox Foundation’s new
Trial Finder and send some DNA to 23andMe.com for their Parkinson’s genome
research project. I can do those things. And, what’s that? Harvey says not to get too excited,
researchers are pretty picky about who they want.
(To Harvey) Wait, you said there are
three obstacles. What about the other
two? (listens) Sure, with all this need for research, knowing more accurately
how many people are afflicted with neurological diseases as well as the incidence
patterns and prevalence of such diseases is critical to fueling further
research. H.R. 2595 NNDSSA/aka S425? What’s
that? The National Neurological Disease
Surveillance System Act. It authorizes
the CDC to gather information from existing sources to fill in those
blanks. Where does it stand? It died in
Committee? What has to happen to get it
out of Committee? It needs to be
reintroduced, with more than the ninety co-sponsors it had? Tell me, did Senator Scott co-sponsor while
he was in the House? No, well I believe
I do need to write a letter. What’s the
third obstacle?
(To the audience) OK, OK, Harvey says without
answers to those basic research questions I was asking before, products can’t
be developed.
(To Harvey) But the drug companies
must be working on this research…. They’re not?
They don’t do basic research? Who
does?
(To All) Harvey says the National Institutes of Health
does more basic biomedical research than anyone in the world.
(To Harvey) And Congress wants to cut
its appropriation? Not exactly? Congress wants to cut all appropriations by
sequestration? Now, you’re just a
rabbit, how do you even know that word?
Oh, you learned it from PAN.
Now, I need that pen, Harvey. We need more NIH funding, not less. I need to write two letters now. What’s that you say, it’s too late for
letters? I need to call. How do I do that? I join the rest of the Parkinson’s community
on National Call In Day, February 27th. Where can I learn more?
DISTRIBUTE FLYER ON NATIONAL CALL-IN
DAY
(To All) Now, Harvey brought these and asked us to hand these
out to make it easier for you to take part in the Call In Day.
What’s that Harvey?
(To All) He says “please,” and “thanks for your attention.”
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