Notes on 2004 PAN gathering
By Dennis Wright
The PAN
10th Annual Forum, - they just keep getting better! Somehow PAN is
able to bring people from across the nation and from many different
organizations and unite us for a few days. We come together as
individuals to become one voice. We are given a common message.
PAN prepares us to pass the message to our Senators and
Representatives. The Senators and Representatives hear our
individual stories. With quivering voices and tears in our eyes we
tell them about our dreams lost, our families in trouble and our
careers ruined. All of us, for one day, spread the PAN message.
The PAN
message this year included a new concern. The usual funding issues
were there, continue the five-year plan to double the NIH's budget,
increase the budget for the Army NETREP projects, and give PD
research a fair share of the research funds. The new concern is the
lag time between identifying a new treatment and getting the
treatment tested, approved and to the public. This testing,
approval, distribution process is called Translation.
It is the
testing of new treatments that is becoming our next obstacle to
finding a cure. You can only go so far with rats and lower primates
for testing. . Historically, we PDer's have been slow to volunteer
for drug testing. We must get involved with the testing of new
treatments. There are lots of treatments coming up that will require
testing before the FDA can release them to the general population.
I saw pages and pages of promising drugs ready or soon ready for
testing. A national web site is being prepared to put us together
with the appropriate researchers. Do you want to find out that "the
cure" was discovered five years ago but the translation is not yet
completed? I think not; volunteer for testing.
Stem
Cells, the wrong button to push. Just when ya think you've got it
figured out, some one in the crowd of "experts” stirs up the pot.
Reproductive cloning is the bad boy. Therapeutic cloning is good,
intended to create replacement tissue. It may offer a cure for PD
but not yet. Inside the therapeutic cloning issue there are some
problems with the definition of when a bunch of cells become a
life. The Bush administration is wading into the life question. I
don't expect clarity any time soon.
Under the
title "Juicy Tidbits" is the blueberry. Good news keeps coming in
on this little blue free radical killer. What some snickered about
last year is gaining more serious chatter this year. Blueberries -
good for your brain.
Another
highlight this year was a little movement class presented by Mr.
John Argue. What a treasure! He has an amazing understanding of
the movement issues associated with PD. His lessons have value for
anyone with PD. Learn why certain movements are difficult and how
to overcome these difficulties. Order his book, his video companion
to his book, or bring him to your area. His web site:
www.parkinsonsexercise.com
Joan
Samuelson, founder of PAN, gave another of her great motivating
speeches. She has a way of stepping through the wall of strength I
protect myself behind. She reminds me of the years that have past,
that we are still sick, and that we have been sick long enough!
Hearing her speak is always emotional and always brings me close to
tears. On a scale of 1 to 3, this year’s speech is rated two
tissues.
The 10th
Annual Parkinson Action Network Forum was just like the previous
gatherings. It was an opportunity to meet with some of the world’s
leading scientists. A chance to talk with your elected
representatives. A time to make a difference in my health and
life. The PAN Forums - they just keep getting better.
About the author:
Now in his early 50's, Dennis Wright has lived with
PD for 12 years. This was his forth visit to DC as a PD Activist
representing Washington state.