Dr. MitsumotoNow, 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