On December 8 to 10, 2005, the 16th International ALS/MND Symposium was held in Dublin, Ireland. This conference turned out to have the largest number of delegates attended. It surely had a lot of exciting presentations, both in the clinical and basic science fields in ALS. Although I have to tell you that there was no major breakthrough, a great many presentations were so important and pivotal in expanding our understanding of the disease mechanisms and how to provide better care for our patients. Our Center was represented by a large number (11 of us) with lots of activities, such as coordinating Investigator’s meetings for both the CoQ10 and Minocycline multicenter trials as well as organizing an ALS Research Group meeting. For scientific presentation, Jackie Montes, PT, MA, presented a poster showing the results of the first patient-administered ALSFRS-R which is compared with traditional evaluator- assessed techniques. The study confirmed it was highly reliable. If needed, we can use this scale, and now patients can evaluate their own ALSFRS-R score. Toby Tider, MSW (who worked closely with Dr. Steve Albert) presented a talk on Sexual Issues in patients with ALS at the ALS Allied Health Conference, which received a lot of attention because despite its importance for many people, the subject is often shied away from. Petra Kaufmann, M.D., M.Sc. gave a poster presentation of her epidemiological study of recent changes in in-hospital care for patients with ALS. Minority populations seem to have less inhospital care, but we need more data to confirm this provocative result. Paul H. Gordon, M.D. gave two presentations: the first were the results of glatiramer acetate (Copaxone) in patients with ALS study. He showed the drug was safe and revealed glatiramer could change immunological status. It is highly intriguing, and we are very much interested in a future study but a company which produces the drug is still assessing the future direction. Dr. Gordon presented another paper on a statistical model for a new combination treatment. In my mind, it is imperative that this disease be treated by multiple medications; yet how to proceed with such treatments, and how to practically perform clinical trials is still an enormous challenge. It is our fortune to have outstanding biostatistical colleagues with us at Columbia. They have developed a very attractive statistical approach, which Dr. Gordon presented. Now, he is moving the project forward into reality. Lastly, I also had the opportunity to present two papers: the first was to give the results of a test-retest study to establish the accuracy of a telephone interview, in contrast to a traditional in-person interview. This was the first such investigation showing that the use of a telephone interview is as good as an in-person interview for our genetic environmental epidemiological study, which is steadily making progress. The other paper I presented was a result of state of the art diffusion tensor imaging of brain in patients with ALS. The study suggests that ALS is not pure motor neuron disease and sophisticated neuroimaging technology would help us enormously to understand the disease mechanisms in ALS. These presentations were physically done by a few of us but in reality our entire team and a large number of excellent collaborators helped us to get there. We are grateful, but most importantly, we are deeply grateful for your participation in our research. This type of conference is so important for doctors, nurses, therapists alike, because we can learn from others and improve our knowledge and skill to provide better care. A number of PALS (people with ALS) also attended and enhanced the ALS community. The next meeting will be in Yokohama, near Tokyo, November 2006. For the entire afternoon Wednesday, January 18, 2006, we devoted time for an ALS Multidisciplinary Care Center retreat. The entire team including, Dr. Robert Basner, pulmonary specialist, Ms. Jackie Puerta, an MDA patient service coordinator and Ruth Ann Rubinstein, a center volunteer, got together. Ms. Gabriela Harrington organized and moderated this important meeting. Believe it or not, managing a multidisciplinary care center like ours involves so many details and issues. Some of the topics discussed were how to make an appropriate appointment (whether it is for Tuesday or for Friday), how to complete the chart, how to take effective telephone messages, how to effectively provide team care for each patient, how to conduct clinical research, etc, etc. It was a very productive meeting. What we think is best may not be best for you. If you have any suggestions and comments about the multidisciplinary care and management approach at our center, we are open to listen to you. We are committed to doing the very best. The last thing I would like to mention to you is that we are making progress on the DNA Repository of ALS. This is an unprecedented collaboration among the National Institute of Neurological Diseases and Stroke, ALS Research Group, MDA and ALS Association. During last November and December, all 6 key coordinating centers which have on-going NIH grants for clinical trials worked very hard to get an individual supplement grant approval from NIH for the DNA banking. Moreover, we also sought the additional grant support from MDA and ALS Association for funding a research coordinator for helping the database management for DNA collection. Now, nearly 80 ALS centers in the United States are working closely with these 6 coordinating centers in obtaining their own Informed Consent and administrative subcontract. Our center at Columbia University, which has 2 NIH grants for Minocycline and CoQ10 clinical trials, is coordinating DNA banking for more than 25 other ALS Centers. As I said at the beginning, this effort is so unique with almost all of the US ALS Centers working together to obtain the DNA of patients and appropriate controls. This project is essential to find susceptible genes (a reason why some people are prone to have this type of disease) for ALS. The system we have developed is considered a model for any other neurodegenerative disease. We are almost ready to start the project. Now, we need your understanding and cooperation to let us collect the blood samples from you, your spouses, or friends whoever are appropriate candidates. The confidentiality of the individual is fully maintained under the strict HIPAA guidelines. Moving into 2006, we have renewed our commitment to make every effort to work hard to find the cause and cure of this disease. Hiroshi Mitsumoto, MD