^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 20 deg. F northwest wind-bbrrr
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Dear cyber-family of Listmembers,
Ken Becker writes:
"Most of us would rather find the cure for PD than win the lottery.
Ken B"
Ken, I'm with you on this!
I think we should all help out by posting our views on what KINDS of
research will speed the pathway to the cure for PD.
Having had the privilege of being a National Science Foundation
grant reviewer in Physical Anthropology,and having published in the
fields of human evolution, paleontology and human anatomy, I would like
to encourage a dialogue on research priorities, by anyone on the List.
I believe that at any convention, we PWP's and carepartners will
benefit by expressing what WE would like to see as research priiorities.
Here are my own:
I would emphasize medicine, not surgery. I would ultimately want to
see medicines or supplements needed to control, or possibly cure,
Parkinson's as the TOP priority.
Here are some areas that intrigue me as rich with potential to lead
to the cure(s):
1. Genetic research which may point towards inborn enzyme coding
errors that cause the manufacture and the delivery of dopamine to be
impeded.
2. Biochemical research on different aspects of the uptake of
dopamine at its receptor sites.
3. Screening tests for Parkinson's.
4. Neurophysiological research on cellular growth, development and
aging in different brain tissues.
4. Differentiation of research treatment for the different doparmine
deficiency disorders grouped under the word, "Parkinson's." These
include tremor-dominated, stillness-dominated, early onset, and late
onset, among other sub-types we PWP's all recognize as somewhat
distinct..
On the subject of "unity."----
I personally cannot attend a conference sponsored by the NPF,
unless it finally reaches out to me to resolve the financial loss I
experienced as a patient whose NPF appointment in Miami was abandoned. I
will be discussing this unfortunate disaster with my neurologist on
Thursday.
My trust level for the NPF is still close to zero, because of their
handling of me as a potential patient.
I think a completly neutral and unaffiliated planning committee, a
non-Miami site, more outreach to local support groups, adequate time for
these group members to respond, and more emphasis on what we want and
need in the research areas would all be helpful elements of a PWP-led
convention. This would not exclude NPF'ers like Jim Cordy, but it WOULD
open up the process more democratically to less-heard, but equally
enthusiastic grassroots advocates like Barb Mallut or Helen Deitz, and to
the huge "silent majority" on this List, and elsewhere.
We ought to try to define what we feel the research priorities are,
just as researching scientists do, by open discussion on our List, don't
you think?
I hope JR Bruman, Brian Collins, Donna Bassolino-Klinas and others
in scientific fields will help lead here, both with your comments, and
questions for all of us.
So to move towards "unity," changes are needed. I feel that the
current patient congress is NOT open to the whole List. My instincts are
telling me to do whatever I can to reach out--to
OPEN UP THE PROCESS.
(Prof.) Ivan Mfowethu Suzman
Portland, Maine
