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Now, it is the time for the Spring
Issue of our Newsletter. One highlight
during this winter season was obviously
our trip to Japan. A number of us went to
Yokohama to attend the 17th International
Motor Neuron Disease Symposium in
December. I was proud that this important
event was finally held in Japan because
more Japanese ALS investigators have
joined in the search for the cause and cure
of this disease. In this issue of the
newsletter, you will find our staff
members’ impressions of the trip and the
meeting.
I was asked to give the Clinical
Highlights summary at the last plenary
session of the meeting, so I listened
carefully to all clinical presentations. This
symposium has two simultaneous sessions
going on, and attendees can choose which
they wish to attend: one has a clinical
focus, and the other, a basic science focus.
One key point in basic science research
stands out: The early results of human
genome-wide scan project, which was
supported by MDA through Augie’s Quest,
were presented. Investigators found that
roughly 50 genes are potentially different
in patients with ALS, and a few crucial
genes are now the focus of studies which
show exciting developments. A similar
genome-wide study has been also
performed at Johns Hopkins and the NIH.
These efforts may yield an exciting breakthrough
in the near future. Also
highlighted was the issue of cell traffic and
transport, which controls all proteins and
cell chemicals, and seems to meet with
some difficulty in this disease. Other
topics included research that shows the
cells that are affected in
ALS are not just motor
neuron cells, but also
surrounding and
supporting cells, such as
glial cells, and even blood white cells.
In the clinical arena, there were
many important papers presented, but I
was especially struck by was the way the
Japanese people deal with tracheostomy
and long-term mechanical ventilation
(LTMV). A number of Japanese
colleagues gave excellent talks on this
issue. The Japanese Government long time
ago passed a law covering all the expenses
of care involved with intractable diseases
such as ALS. Now, all Japanese
communities, neurologists who provide
care, voluntary disease organizations,
patients and family caregivers are acting as
a team to make a major transition from
long-term stays at teaching hospitals to
either a long-term stay at the National
Hospital network or home care setting.
Each community in Japan is trying to
develop unique programs for improving
functional independency and even job
opportunities for those who are treated
with LTMV. It seems patient care is
clearly shifting to home or National
Hospital settings with a positive attitude
towards ventilatory care in ALS. Once
LTMV is placed, no alternative course can
be allowed in Japan at this point, although
debate has begun. In contrast to Western
procedures, respect for self-determination
is still limited. This exchange of ideas
about Western and Japanese practices helps
us learn more about the best way to deal with this difficult issue of long-term mechanical
ventilation.
In addition to this Symposium, I went to Fukuoka
to give a talk at Sangyo College of Medicine, and also
attended another meeting in Awaji Island to develop a
consensus about ways to improve electrodiagnostic
(EMG) criteria for an early and accurate diagnosis of
ALS. Awaji Island is located in a beautiful inner sea,
accessible by the world’s longest suspension bridge that
goes between Kobe and the Island, where 12 years ago,
an earthquake took place. There were only eight
international members at the meeting, which lasted from
7:30 am till 10:00 pm for two days, leaving us no time to
enjoy outside. It was rather a hectic meeting. If you
allow me to say something personal, I also attended a
reunion of my medical school class, 38 years after
graduation, and met old friends. It was a great joy to see
many friends, some working in different field and some
already enjoying the meaning of their lives. So I must
say this trip was very productive indeed.
In the next Newsletter, we will discuss the
research activities at our Center. For the last few months,
I have been working feverishly on an NIH grant
submission. We are all working very hard to provide care
for our patients and advance our research.
Hiroshi Mitsumoto, MD
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