I returned home from the 9th Annual Parkinson's Action Network Forum,
inspired, energized and with many new ideas about how we can  "Turn a
Diagnosis into Action" --  the theme of this year's Forum. I'd like to
share some of the highlights (for me) of the forum with the list. As i go
through my notes I know there is just too much to cover here, but if
anyone has questions or wants more information about any of this, please
contact me off list.
Also see the PAN website for more information at
www.parkinsonsaction.org
The entire PAN staff did a terrific job  and deserve many thank yous.

As always the best part  of  the Forum was meeting other advocates from
all over the country and learning about all the projects and activities
going on in our shared battle against Parkinson's.  Over 150 people
attended this year. It was great talking in person to many parkinsn list
members.  It was also wonderful to meet those attending their first PAN
Forum, as well as reuniting with old friends.  Unfortunately I noticed
this year the absence of many dedicated, long-time  PD advocates who are
no longer able to make the trip to DC due to their worsening conditions.
It is for all of these folks especially, that we must dedicate our
efforts to put an end to PD.

The first day of the Forum focussed on Research and Education. Among the
distinguished researchers who addressed us and answered our many
questions were:
Dr. Gary Fiskum of the University of Maryland who discussed the role of
mitochondrial impairment in Parkinson's disease. The mitochondria is the
location of cellular energy metabolism, and is the primary target of
toxins that have been shown to model PD in laboratory animals. Dr.
Fiskum's research also entails developing "clinically feasible
neuroprotective interventions." He suggested that rather than looking for
one treatment, a "neuroprotective cocktail" might be developed. He also
stressed the importance of collaboration between the NIH and the
pharmaceutical companies on clinical trials and also preclinical
development of new neuroprotective treatments. (more on COLLABORATION
later, which was a major  thread running throughout the Forum)

Dr. Clive Svendsen of  the Stem Cell Research program at the University
of Wisconsin spoke about his research with GDNF (glial cell line derived
neurotrophic factor) He called this protein - "a fertilizer for the
brain"  Researchers at the University of Kentucky and in  Bristol, UK
have  found that by continuously infusing GDNF into the brain using a
pump, patients experienced measurable improvements. (Results published in
Nature Medicine, March 31, 2003, Gill et.al).  Dr. Svendsen said he was
"cautiously optimistic" about these results.  A larger, double blind
trial is now being conducted by Amgen Pharmaceuticals.

Dr. Howard Federoff, of the University of Rochester discussed
collaborative (there's that word again) gene therapy research for PD
which involves developing preventive tactics, halting and reversing
existing damage to neurons, and restoring dopamine production. He is
leading the Parkinson's Disease Gene Therapy Study group -  a consortium
of  7 research institutions throughout the U.S.- all cooperating on  an
interdisciplinary approach to the research. Each institution is focusing
on a certain aspect of the research - such as delivery vectors,
identifying target genes,  turning on and off gene switches in the brain,
 immune reactions and other adverse effects, use of neuroimaging
techniques to evaulate treatments, developing new biomarkers for the
disease (e.g. identify possible proteins in the blood), bioethical
aspects, and minimizing intellectual property barriers)  -- and then will
pool all data and results - which will hopefully lead to effective and
safe gene therapy treatments.

Dr. James Joseph of Tufts University was one of the speakers on
"Non-traditional therapies for Parkinson's". (Also i think he won the
prize as having the best sense of humor among the presentors :)
His research found that a diet high in  fruits that contain large amonts
of  anti-oxidants, particularly blueberries, brought about increases in
neuronal communication and motor behavior in rats with induced
Parkinson's symptoms. Other fruits and vegetables that are high in
antioxidants (and good for us) include strawberries, cranberries, plums,
kale, spinach, Brussel sprouts, broccoli and beets.  This is something
our Parkinson's dietician Kathrynne Holden has also been  advising us
about for some time.
PAN is currently working with Senators Cochran (MS) and Kennedy (MA) to
obtain federal funding in the FY2004 Agriculture Appropriations bill  for
further "neutraceutical research" on Parkinson's and blueberries.

more on Federal research programs and political action later
Linda

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